Help Sierra

Make May Your Mat Hire Month

2011-07-19T00:16:00.002+10:00

SIERRA THANKS YOU
We would like to thank the following participants for their generosity and commitment to making a difference.
Bikram Yoga South Melbourne
Bikram Yoga Glen Waverley
Bikram Yoga Fitzroy
Bikram Yoga Elsternwick
Bikram Yoga Hobart
Bikram Yoga North Brisbane
Bikram Yoga North West Sydney
Bikram Yoga Byron Bay
Bikram Yoga Geelong
Bikram Yoga Joondalup
Bikram Yoga Scarborough Beach
Bikram Yoga Perth
Bikram Yoga South
Bikram Yoga Sutherlandshire
Thank you Mili, Michael & Susan, Sherry & Rachel, Anna & Ben, James, Norma, Gail & Charelle, Jo, Stuart, Adam & Jen & Nathan.

Special thanks to Maggie Carr for rallying the schools together to organize this fundraiser!
Final Amount Raised: $7831 !!

Shirley completes run for Sierra!

2011-07-10T23:45:00.002+10:00

Thanks for all your support. Please donate to support Shirley by clicking on donate and following the prompts.

Curry and Cake Days....and now Car-boots as well

2011-07-06T21:38:00.003+10:00

Dear Friends,

In addition to doing the Car-boots...

I am running the London 10k this weekend on 10th July 2011 along with 10,000 other crazy runners raising money for charity. I have injured my knee in my training which means that I wont come in under 1 hour which was my personal goal AND I will complete it even if I have to walk/crawl across the finish line because of my love and admiration for Sierra and her parents. So please once again give generously – I know we are asked on many occasions to donate money and I am asking again. Any amount can make a big difference. **See below how to contribute!

Yes I am coming to you again in my bid to raise money for a worthy cause. Yes another one. Some of you know I have been supporting financially, as well as in other ways, my friend’s Karen and Shane’s daughter for the last four years. Sierra has severe cerebral palsy Over the past 4 years we have raised money for Stem Cell Therapy and a Computer to help Sierra communicate with the world. These contributions have made a tremendous impact to Sierra’s long-term health and quality of life.

One of the most tragic effects of CP is that a fully functional mind is trapped inside a spastic body. The level of spasticity will vary. Sierra is at level 5 - the most severe. There are limited ways to manage spasticity and unfortunately using Botox and physiotherapy are no longer enough. Karen and her husband, Shane, have been agonising over the decision to put Sierra through an operation that cuts into the nerves of the spine to help reduce the level of spasticity. The RISKS ARE HIGH but if successful, it will significantly reduce Sierra’s spasticity in her legs, feet and upper body. It will help her breathe and swallow better and aid with the most basic of movements and functions of the body that we take for granted day to day. It will also save her from the excruciating pain of sitting for the rest of her life on dislocated hips as the femur bones dislocate due to the constant pull of spasticity.

The cost of the operation is €8000 and will require the family to travel to Prague where one of the world’s leading Neurosurgeons, MUDr. Boris Zivny is based. The family have been consulting with him since Sierra was 8 months old. He knows Sierra’s body, the progression and impact of the spasticity and her overall condition very well both through observation every 6 months and the application of Botox.

The family will need to raise money for the operation, airfares, accommodation, etc. This has been a most difficult decision for Karen and Shane. I’m hoping we can help lighten the load by relieving some of the financial burden.

So I am running the London 10k this weekend on 10th July 2011 along with 10,000 other crazy runners raising money for charity. I have injured my knee in my training which means that I wont come in under 1 hour which was my personal goal AND I will complete it even if I have to walk/crawl across the finish line because of my love and admiration for Sierra and her parents. So please once again give generously – I know we are asked on many occasions to donate money and I am asking again. Any amount can make a big difference.

Please go to the paypal account and pay your sponsorship. See link below. You can pay with any card and with paypal account.

Alternatively you can transfer funds into the UK account, also below.

Please leave a note to say that the donation is for my 10k and/or send me an email.

I appreciate your generosity and your love for others.

Make May Your Mat Hire Month

2011-07-03T17:17:00.002+10:00

Hello all! Here's the update...

So far the total from the studios below for May Mat Hire is:

$6744!!

Well done to evereyone who participated. We have a couple more studio's money to come in so stay tuned. ;-)

Participating Studios:
Bikram Yoga South Melbourne
Bikram Yoga Glen Waverley
Bikram Yoga Fitzroy
Bikram Yoga Elsternwick
Bikram Yoga Hobart
Bikram Yoga North Brisbane
Bikram Yoga North West Sydney
Bikram Yoga Byron Bay
Bikram Yoga Geelong
Bikram Yoga Joondalup
Bikram Yoga Scarborough Beach
Bikram Yoga Perth
Bikram Yoga South
Bikram Yoga Sutherlandshire

Wow!!!

Thank you Mili, Michael & Susan, Sherry & Rachel, Anna & Ben, James, Norma, Gail & Charelle, Jo, Stuart, Adam & Jen & Nathan.

You guys rock! :-)

Family Picnic Day

2011-04-27T11:31:00.003+10:00

Tiffany and Dave are raising money by doing a Family Picnic Day... one Sunday soon ... date yet to be set. Shane, Sierra and I will be the special guests. It will be run like a birthday party with all the food and games, except we'll have an admission fee and a donation tin handy!!

Date to come...

Sierra and camping at ConFest

2011-04-25T18:19:00.006+10:00

Shane and I decided to take a risk and try camping with Sierra. We used ConFest as a place to start. Actually, the whole thing went rather well. As most of you are aware Sierra is a good traveller so luckily there was no problem with the drive. The festival itself, although a lot more "hippy" than I expected, was good fun.

Usually I am busy telling people and thinking about all the things we can't do because of Sierra's disability. Now Shane and I have another thing we CAN do with Sierra!

Curry and Cake Days....and now Car-boots as well

2011-04-12T11:25:00.004+10:00

My beautiful friends in London are joining in to raise money for Sierra's operation. Last year with tremendous success they held "Curry and Car Wash" and "Curry and Cake" days in the street where they lived. They offered that neighbours could pay £2-£5 pounds for some home cooked curry and get their car washed at the same time or come over and buy some home cooked curry or cake. It created a great vibe for everyone involved, new relationships were built and it raised a fair chunk of money.

This year Fiona has kicked things off by suggesting a day in Brighton with Sangita and others offering to help.

Shirley is doing a charity carboot in Crouch End on 6th May. It is a special event happening on Friday evenings. They are giving her a table free & her friends are donating great clothes and jewellery.

Shirley is also running London 10k in July for Sierra on 10th July!!

Amazing!

Make May your Mat Hire Month

2011-04-10T23:47:00.010+10:00

So far participating:

Bikram Yoga South Melbourne
Bikram Yoga Glen Waverley
Bikram Yoga Fitzroy
Bikram Yoga Elsternwick
Bikram Yoga Hobart
Bikram Yoga North Brisbane
Bikram Yoga North West Sydney
Bikram Yoga Byron Bay
Bikram Yoga Geelong
Bikram Yoga Joondalup
Bikram Yoga Scarborough Beach
Bikram Yoga Perth
Bikram Yoga South
Bikram Yoga Sutherlandshire

Wow!!!

Thank you Mili, Michael & Susan, Sherry & Rachel, Anna & Ben, James, Norma, Gail & Charelle, Jo, Stuart, Adam & Jen & Nathan.

You guys rock! :-)

Make May your Mat Hire Month

2011-04-09T15:00:00.005+10:00

Copy of email that's gone out from the beautiful Maggie to ask all the Bikram studios in Australia to support Sierra.

Dear fellow Bikram Studio Owners

I know it’s been a tough year emotionally for many, with many natural disasters around the world occurring and much fundraising done in our studios to help those in need. But I’m wondering if you ALL could find it in your hearts to help out just one more time… PLEASE READ ON.

As many of you know, one of our Melbourne teachers, Karen Jepp, has a little girl called named Sierra who has severe Cerebral Palsy. Over the past 4 years we have helped out from time to time with raising money for Stem Cell Therapy and a Computer to help Sierra communicate with the world. These contributions have made a tremendous impact to Sierra’s long term health and quality of life.

One of the most tragic effects of CP is that a fully functional mind is trapped inside a spastic body. The level of spasticity will vary. Sierra is at level 5 which is the most severe. There are limited ways to manage spasticity and unfortunately using botox and physiotherapy are no longer enough. Karen and her husband, Shane, have been agonising over the decision to put Sierra through an operation that cuts into the nerves of the spine to help reduce the level of spasticity. This RISKS ARE HIGH but if successful, it will significantly reduce Sierra’s spasticity in her legs, feet and upper body. It will help her breathe and swallow better and aid with the most basic of movements and functions of the body that we take for granted day to day. It will also save her from the excruciating pain of sitting for the rest of her life on dislocated hips as the femur bones dislocate due to the constant pull of spasticity.

The cost of the operation is €8000 and will require the family to travel to Prague in July where one of the world’s leading Neurosurgeons, MUDr. Boris Zivny is based. The family have been consulting with him since Sierra was 8 months old. He knows Sierra’s body, the progression and impact of the spasticity and her overall condition very well both through observation every 6 months and the application of botox.

The family will need to raise money for the operation, and for expenses such as airfares, accommodation, etc.

This has been a most difficult decision for Karen and Shane. I’m hoping we can help lighten the load by relieving some of the financial burden.

HOW CAN YOU HELP?

I’ve decided to make May my “Mat Month” for Sierra at both my studios (South Melbourne & Glen Waverley) and will be donating 100% of MAT HIRE to Sierra. Would you consider doing this too, please? If you can’t do an entire month, would you consider perhaps one or two weeks’ worth? If so, please RESPOND to this email. I will be creating a poster and decorating the studios with balloons & hearts, etc to help raise awareness of the task. I usually put a tin on the desk and people pop their $1 in the tin (and more). It’s easy and it doesn’t really take that much off the bottom line!

So if you are interested in participating, please respond to this email. I hope to hear from you soon.

On behalf of Karen, Shane and Sierra Thank you for your consideration
Much love Maggie Carr

Fun fundraising for July operation

2011-04-04T00:21:00.006+10:00

Maggie the Bikram studio owner for Bikram Yoga South Melbourne and Glen Waverley has offered to rally the troops to do "Make May your Mat Hire Month!" This is a very generous offer. Shane and I will be doing everything we can to support this being successful!! This is the second fundraiser for 2011 and the money will support us getting the operation to reduce Sierra's spasticity. Much more on this to come...

Fun fundraising for July operation

2011-03-30T13:55:00.007+11:00

Nigel reported back the Christopher Place Craft Day went particularly well. It was a fun day and raised close to £400! Good work Nigel and Katie.

Half of the amount raised will go to Sierra and this is the first fundraiser to kick off this year's efforts....

Shane and I have finally made the very difficult choice to do the operation that means cutting nerves in Sierra's spine to reduce spasticity. It costs at least €8000 and will require travelling to Prague in July.

Most people realise this has been a very difficult choice. Please support us in any way you can. Of course the most wonderful thing you could offer is to do a fundraiser or become one of "Sierra's Angels" and donate £10 a month by direct debit.

Craft day for Christopher Place and Sierra Hill

2011-03-20T23:05:00.006+11:00

My wonderful friend Nigel is holding a fundraiser today for his daughter Honor's (pictured) school and Sierra. Nigel's partner in crime Katie has rustled up the troops and there seems to be quite a lot of interest.
It starts in a couple of hours so stay tuned and I'll keep you updated.

Wish I could be there!

4W Driving

2011-03-07T12:34:00.003+11:00

The best part about 4W Driving is how much Sierra enjoys it! She giggles madly as the car goes up and down, up and down.

The temporary abode we stayed in was lovely and it was great to have everyone together.

Sierra is the most amazing traveller. It is hard to imagine anyone being as easy to be with as her.

Picture is Mum's boyfriend Darrell with babe in arms.

A no therapy day on London trip

2011-02-19T12:20:00.006+11:00

6:00am Sierra needs milk after being awake for an hour due to jet-lag

7:00am Attempted breakfast with the family we're staying with, but Sierra won't eat

8-11am Stuffing around getting Sierra and I dressed, packing bags for the day

11:00am Bus to Leicester Square. Sierra still won't eat and now won't drink either

12:00pm Finally choose a cafe with as few tourists as possible and sit down with friend Katie, her 2 kids, and Sierra....kids eat, drink and play. Sierra doesn't want food or drink but is tired and starting to have seizures

1:00pm About to have a breakdown from the stress of it all and ask as kindly as possible if Katie and kids could leave me behind so I can sit with Sierra while she sleeps (in my arms), and I can try alone to give her some food

3:00pm Sierra has slept and FINALLY had something to eat! Now, I can go shopping!!!!!!

3:15pm Realise it's almost impossible to have a buggy in small shops in London during the Summer sales

3:30pm Friend Sufiya texts to say she's around the corner and wants to meet while in I'm in London

3:45pm Sufiya takes over pram while I shop

4:30pm I've managed to buy 2 items in 1 shop, I'm now ready to collapse.....this day is too long!

5:30pm After coffee and catch-up with Suf, I give up on tubes and buses and get a black cab back to Katie and Nigel's house

Tales from the road...

2011-02-11T23:04:00.005+11:00

When travelling o/s ordinarily I won't accept "meet and assist" because Sierra can't sit in the wheelchair and they refuse to carry the car seat or bags, so there is no point.

While travelling in December, the Qantas crew suggested I sit in the wheelchair and nurse Sierra.

Hilarious!! I am this energetic woman who can't wait to get off the plane and walk a million miles an hour and there I was being wheeled around. The "meet and assist" crew took me from the plane, up the lift, through duty free (kindly stopping at the pharmacy for paracetamol) then back downstairs in the lift to the gate.

Sierra loved it! I held her in my arms and she looked up and smiled at me adoringly.

This week at home...

2011-02-05T13:27:00.005+11:00

Shane and Sierra went back to CPEC (Cerebral Palsy Education Centre) to be videoed and compare progress to this time last year.

Sierra is rolling now and touching...her mental progress is also good. Whenever she makes noise Shane says, "Sierra, it sounds like you have something to say...Do you want to use your book?" It's that kind of discipline that will make the difference in her speaking with the computer.

Australia Day

2011-01-26T15:48:00.004+11:00

It's Australia Day for most of Australia. For our family it's Sierra's birthday! Today Sierra is four years old, who could believe it?

Our family have met in Beachport to go 4WDriving. I love this annual get-together. As a family we have found a way to celebrate and do something we can all enjoy. Surprisingly, Sierra loves the driving. She laughs heartily as we go along the dunes. She loves the bumpy ride!

Luckily it's sunny and now I really must go and join everyone on the front deck for a glass of wine....

Back from London and Prague

2011-01-14T19:15:00.004+11:00

This December just Sierra and I went o/s to get help for Sierra.

I am always astounded by what an amazing traveller Sierra is. She is better to travel with than nearly anyone I know! She's relaxed, doesn't complain, watches TV and helps me cut queues due to her disability :-)

We began out trip in London where we saw a new therapist named Heidi. Anel (Sierra's physio for life) had only just given birth so we understood her being unable to treat us this time. However, we were amazed on day 5 when she poked her head in the door and said "Hi". She couldn't stand all the good news about Sierra after she was so poorly last July. She had to see it with her own eyes....she got in her car with her 10 day old daughter and her husband and drove 2 hours to see us!

In Prague we saw Boris and Anna. Both confirmed Sierra's great progress with both vision and motor skills. Thank goodness for their help in July or we would still be blind and poorly. We've come back with 6 months supply of contact lenses and epilepsy medication.

Thanks for your support everyone. We couldn't do this without you!

Love Karen

Five Days Later

2010-08-01T05:47:00.003+10:00

We don't want to get too excited because the last 2.5 - 3 months has been awful, however, the new drug does seem to be making a difference. We have seen less seizures. We haven't seen the extreme morning seizure that Sierra usually has every morning, for all of this week. Anel confirmed that she is finally seeing Sierra (the person) again after three days of the new medication. I can bring her our of a seizure by stroking her head which previously could not be done.

We are leaving London tomorrow and are moving onto our holiday in Sardinia. Sierra will be looked after by a friend, Kerry. Fingers crossed she reports even more improvement.

At this point we are only on half doseage of the medication so if it's helping we can hope for even more when we up the doseage in the next few days.

Appointment with Anel

2010-07-27T15:12:00.002+10:00

Yesterday we had our first appointment with Bobath physio Anel. Last week after seeing Dr. Zivny we altered the seizure medication Sierra is currently on and have allowed any changes from doing this to occur (7 days). We agreed to start Sierra on the new epilepsy medication as of yesterday evening so that Anel can obseve her this week, along with us, and see if there are any changes in the level of seizure activity. We are only on half dose because you have to ease in to the drug but anyway fingers crossed...

Appointment with Tereza

2010-07-27T15:01:00.002+10:00

We saw the Vojta physio Tereza on Thursday after she attended and helped translate the eye appointment with Dr. Zobanova on Wednesday. It is always better to have Tereza with us at appointments where possible because she is able to give a deeper cut to whatever the Prague doctor has been able to communicate. Both our doctors have amazing English but Tereza will say it again and somehow it helps with extra detail.

Tereza is very concerned about Sierra's seizures. She has always worried that they were brought on by the stem cell therapy that Sierra had. Dr. Zobanova assured her this is not the kind of seizure activity you would see from an after effect of stem cell. Although she is an eye doctor and not a neurologist, this is what is so SO amazing about the doctors in Czech Republic, they are not narrow in their knowledge. Dr. Z has made it her business to stay informed about stem cell and knows a lot about seizures because both can affect vision.

Tereza took it upon herself to call a couple of other well known neurologists she has worked with to ask about the new drug we have been recommended. She heard from them that it is a good drug and there is probably a 50% chance of it being effective.

Appointment with Dr. Zobanova

2010-07-27T14:54:00.002+10:00

We saw Dr. Zobanova on Wednesday after seeing Dr. Zivny on Monday. Unfortunately she said that Sierra's vision has regressed. She had previously gone from zero ability to focus to normal vision through training the muscles in her eyes with contact lenses and due to seizures she is unable to focus (within short distance) again.

As long as we are able to get the seizures under control Sierra should learn to focus again but this was obviously a disappointment.

We have begun using the contact lenses again...

Appointment with Dr. Zivny

2010-07-20T07:19:00.003+10:00

We had the appointment with Dr. Zivny today. He has given a diagnosis of a type of epilepsy that Sierra is developing and has recommended a new drug that is available in Europe that he thinks will control these new seizures.

He says the drug is not available in America and Australia because it always takes 10-15 years for epilepsy treatment to reach these countries.

I am so SO thankful we came. However, Sierra is currently not in very good condition because she has had at least 8 weeks of heavy seizures and we have been treating this with Valium. Sierra is weak and it will take time for her to recover.

Thank you to everyone who is helping us raise money for this trip. We are not there yet but we are very, very thankful for the support.

Please can you help Sierra in June

2010-06-10T22:16:00.000+10:00

Hi,

Please can you help?

We've had really good results with Sierra since we started therapy and until recently thought she would be able to drive her own chair, communicate through a computer and live with assisstance independently.

Unfortunately her epilepsy has recently overcome us. She has had a recent increase of seizures that we don't seem to be able to control with medication other than valium. We try not to use valium unless we have to because it limits brain activity.

We are requesting help raising money for our July trip to London/ Prague to see Sierra's Neurosurgeon who is willing to have us stay with him (he is an epilepsy expert), Eye Doctor (seizures are affecting her left eye) and regular physios to assess whether the seizures are taking her backwards intellectually and to get a home physio program for the next six months.

If you could donate to our July fundrasier or do a fundraiser of your own creation in June please let us know. We welcome any help we can get. We need approx $14,000 or £7000 to get flights and therapy.

Please let me know if you can help.

Update of Results from all our Fantastic Trips!

2010-03-25T20:05:00.003+11:00

#5 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offered OS.

December 09: We returned to Europe and saw Anel and Tereza for Physio and see the Neurosurgeon and Eye Doctor.

This time it was just Mummy and Sierra. Shane and I realised we are now trained enough as physios that one of us can teach the other whatever we have learnt. I was very excited to have some time with Sierra on my own and she was a dream on the flight on the way over. We spent two days in London visiting friends, staying in our old haunt Camden watching DVDs and adjusting to the time zone and freezing temperatures outside.

Next stop was Prague. This time we stayed with the neurosurgeon in his family home. Dr Xivny and his wife Renata were wonderful hosts and we felt well cared for. It was great for Dr Xivny to see Sierra in a home environment it gave me a chance to point out some of the struggles and concerns I had while he was with us 24 hours a day. The depth of relationship we have built with them is amazing. Dr Xivny commented that Sierra's intellect had improved which was very exciting and his overall prognosis is that she will sit well, stand, take weight through her arms and legs, use her eyes to communicate very well and he also said he was not as pessimistic as me, he thinks Sierra will use her hands well and drive her own chair. Needless to say this was very exciting news!

Terza, the Vojta physio, was the next person who saw Sierra. She was very excited by Dr Xivny's comments. She was also very happy to see her roll for the first time. It was wonderful to see Tereza and get her physio input once again.

Dr Anna Zobanoba was next and as usual Tereza came to translate. Dr Anna commented that Sierra is a completely different child to the first time she saw her, "there is no comparison". Unfortunately Anna thinks the glasses will not be enough and she will probably have to operate on Sierra's eyes when she is 6 However, she continues to say we do not need to worry about Sierra's eyes, her eyes are now perfect and she sees as you and I see. The operation will only be to co-ordinate her "perfect" eyes. I told Anna about the Mytobii computer, to my surprise her face burst into a smile from ear to ear. She thinks this is the perfect thing for Sierra at this time. I'm surprised I hadn't thought to tell her about it before but was very happy to get this feedback.

Sierra and I went back to London to see Anel next. The first thing I did was put Sierra down on the mat so Anel could see her rolling, Sierra immediately rolled twice and Anel managed to catch the second one on her camera! For the rest of the week London was snowed under and it was too dangerous for us to visit the therapy centre so Anel came to where we were staying. The first day Anel visited, to my astonishment, she picked Sierra up, put her on her knee and asked her "did you enjoy your day today with Mummy?" Sierra immediately flicked her eyes at Anel to say yes, then Anel said "and you had banana for lunch, do you like banana?" Sierra flicked her eyes over to say yes again. It was an amazing moment, no-one had realised Sierra could keep up and participate in normal conversation. Anel went home that evening and told her husband "I had a whole conversation with Sierra today!!" This was the beginning of a very exciting week. Anel explained because Sierra could communicate in this way we could do pretending play. Children's toys in the house where we were saying came in handy, Sierra went shopping for Mummy, fed dolly some milk, helped dolly talk on her mobile phone and did drawing. On one of the days Anel exclaimed "oh my goodness she is so ready for that computer!"

The trip was a lot more valuable than I had expected, I'm always amazed at how much value I get from these people and I can't wait to go again in July!

Update about computer

2010-03-25T19:43:00.002+11:00

I haven't been in touch for a while so I thought I better give everyone an update on where we are with the computer. We have exactly enough money raised ($22,600) and now we wait... The new cerebral palsy school Sierra's attending this year has asked us to consider another computer that uses eye gaze that's more compatible with their system. I am now unclear which computer to choose and it has been difficult to find a time when I am at home and the equipment people can arrange bringing both computers at the same time. I've had one appointment and initially it seems Sierra will be better with the computer the school recommends however, I REALLY like the mytobii computer so it will take a little bit more to convince me yet. I have another appointment scheduled in two weeks for Sierra to trial both computers for a second time, in the mean time I'm researching the alternative computer on the internet. Unfortunately these things take some time even after I've made a choice it may take weeks for the government to pay us their part of the funding. I'll keep you up to date with how we are getting on.

Sierra's new school (CPEC) is excellent and has a major focus on communication so all is not lost. We are learning the communication system that will be on the computer as a manual system. That means when we get the computer Sierra will mostly know how to use it.

Christmas Day Class - Bikram Yoga Glen Waverley

2010-01-14T22:34:00.006+11:00

I am so blessed to be part of the wonderful community at yoga. Last year and this year Maggie's Bikram Yoga school's held a Christmas Day fundraiser for Sierra.

Yes, I did say a Christmas Day Class!!!!! The schools raised $1000!

Wow Maggie, what a wonderful and thoughtful way to contribute to us.

The running total is: $18,258.31

Everything makes a difference...

2010-01-14T22:02:00.006+11:00

As part of the 30 Day Challenge people donate and sponsor me. Here's the list of this year's sponsors:

Adam Cohen, Conrad Amos, Geoff Gaylard, Shaun D'Arcy, Brette Lockyer, Benjamin Brodie, Alex Scott, Tania Trentin, Nicole Inston, Pauline Chou, Melanie Dilges, Kaye Ashton, Sladjana Sofranic, Rebecca Cameron, Lisa Johnston, Tracey & Gary, Luisa Garcea, Ravi, Anna Proietto, Tom McKenna, Barbara Smith, Dirk Snelleman, Janet Tang, Sharon Tolentino, Betty Lau, Mark Quinn-Newall, Kasia Tomczyk, Doan Vu, Amanda Reid, Monique Franzese, Antoinette Campana, Maggie Nikoloska, Simon Chen, Devon Peavoy, Eamon Cummins, Natasha Colchester, Johannes Mochayedi.

Thank you everyone!!!

The running total is: $17,258.31

No Alcohol October

2009-12-27T10:36:00.006+11:00

I was on a flight to Abu Dhabi and I met Donal a welder of gas pipelines. He took October off from drinking with his mates to raise money for alcohol awareness for kids. He never got around to donating the money.

He thought kids were well enough aware of alcohol!! He'd offerred to make a donation to Sierra instead.

I received a donation from Lisa (Donal's wife) for $1000!!

Running total is: $14,415.81

November Bikram Yoga 30 Day Challengers

2009-12-25T15:13:00.009+11:00

Another 30 Day and 5 Day Challenger was one of the beautiful Bikram Yoga teachers Kylie Atkinson. Kylie participated in both last year's and this year's challenges.

She raised $220. Thank you Kylie, you are very generous and always a fun and happy person who inspires us all. You are a BIG star.

Running total is: $13,415.81

November Bikram Yoga 30 Day Challengers

2009-12-25T15:06:00.003+11:00

Well done Angela Di Lalla! Angela raised $195.

Running total is: $13,195.81

November Bikram Yoga 30 Day Challengers

2009-12-25T15:02:00.004+11:00

Thank you Belinda Stabb for participating in the challenge. Belinda raised $171!

Running total is: $13,000.81

November Bikram Yoga 30 Day Challengers

2009-12-25T13:49:00.005+11:00

This year there were 35 people who participated in the November 30 Day Challenge. Some of these people used the challenge as an opportunity to raise money for Sierra.

Leah Davidson was one of these lovely people. She raised $101.50

Thank you Leah, the running total is: $12,829.81!

Elena Babitcheva

2009-12-25T13:37:00.004+11:00

My lovely friend Elena, after telling me she couldn't participate, decided at the last minute to join in the 30 Day Challenge.

She went around to everyone at work and raised $590.

It's a funny story...I was at a client's office in Chirnside and I went to the loo. I couldn't believe it...standing there looking in the mirror was Elena. We had talked so many times about her work out at Chirnside but had never realised we work out of the same office.

She invited me in and it was great. I was able to say thank you to all her work colleagues personally.

The running total is: $12,728.31

Ravi the Taxi Driver Aka Winston Wolf

2009-12-24T14:54:00.007+11:00

My friendly regular taxi driver Ravi was driving me one day while I was on the phone to Michael from Bikram Yoga Fitzroy. We were discussing the organisation of the All 5 Classes Challenge. At the end of the phone call Ravi hands me $50 from his own pocket!

Then he asked me a bit more about what we are raising money for and how much is needed. He then said, "Why didn't you say anything to me sooner, I would have already asked all the taxi drivers to contribute by now?!"

He then proceeded to do just that. He went to many of the private hire drivers that he knows and asked them to donate.

A little bit here and a little bit there. Ravi raised $360!!!

The running total is: $12,138.31

Eamon Cummins and Liam Cummins

2009-12-24T14:43:00.004+11:00

These two guys have made a HUGE contribution to our November fundraiser. Eamon owns a building firm called Ultra Builders. Liam (his brother) who works there donated $900 worth of carpentry for us to raffle and now Eamon has made a donation of $500.

Thanks so much guys for your extraordinary generosity.

The running total is: $11,778.31

Last Last Tour De Sierra Update

2009-12-24T10:16:00.009+11:00

Paul's team made one final donation today. Thank you Roger Corbett for your kind donation of $200.

The final total for Tour De Sierra is: $3055.88

This brings our running total to: $11,278.31

Thanks again Paul for all your efforts. We love you.

Closing the gap...after the November 30 Day Challenge

2009-12-19T13:55:00.008+11:00

Dear Jerry, Maurice and David,

We are absolutely delighted to accept your very generous donation to contribute to our fundraising for the MyTobii communication computer.

The computer is an eye-gaze-operated device that will give Sierra the capacity to communicate with other people and fully express herself and her needs. Sierra will begin by using a system of individual symbols which, as she gets older, will be gradually replaced by increasingly more complex systems. As an adult, Sierra will have the option to use a full word processing program on the MyTobii.

We are very excited about Sierra having access to effective communication! We’re already seeing the frustrations that she experiences in daily life, when simply telling us she would like or not like something is difficult. Empowering Sierra and minimizing her difficulties will really improve her quality of life.

We’re not sure how much you know about Sierra’s history. Without the effort we have put in from the time she was diagnosed with severe Cerebral Palsy at the age of 6 months, her body would already be in bad condition and would likely show emerging deformities of back, limbs and hands. Sierra had poor eye sight which we improved with the guidance of an Ophthalmologist in Prague, she has epilepsy we control with medication and involuntary muscular tightness, mainly in her arms and legs.

The physiotherapy work we have done with Sierra over the last 3 years has kept her body in relatively good condition; she has learnt the physiological skills required to be able to operate the MyTobii computer.

It was our goal to buy the computer before Sierra reached the age of 3. We were told that we could make the biggest impact on her body in the first three years and now the focus expands to include communication as a major area of development. My Tobii will open up the world to Sierra through her use of language. She turns 3 in January so your donation brings us even closer to meeting our target!

Deb did a great job of making the announcement both special and a BIG surprise. Shane and I were brought to tears along with the rest of the team.

Thanks again for your fantastic contribution!

Regards,

Shane and Karen

Last Tour De Sierra Update

2009-12-08T23:59:00.004+11:00

Well done Tour De Sierra!! There has been some more donations...
Another $232.31 has come in.

Wow, overall you raised $2855.88 - that's over 13% of the cost of the My Tobii computer. Wow, wow, wow!

Running total: $11,078.31

Pauline Chou

2009-12-08T23:51:00.004+11:00

Pauline comes regularly to my Friday night class. Apparently she used to work with a My Tobii computer and knows it very well. She has made a very generous donation of $300.

It's quite a funny story...she was at uni and all the other computers were broken. Although the My Tobii is VERY expensive it was the only one available so the team asked her to use it but she was instructed not to touch the screen - that meant using her eyes!!

No wonder she understood the value and ease of use of the machine.

Running total: $10,846.57

Raising $$ by Raffles

2009-12-08T23:46:00.004+11:00

During challenge month various items were offerred as prizes for raffles.

For example Liam Cummins from Ultra Builders donated $900 worth of carpentry work!!

In total the raffles raised $662

The running total is: $10,546.57

Very Amazing Veronica!

2009-12-08T23:43:00.002+11:00

Veronica is doing 100 days of Bikram Yoga to raise money for Sierra as her challenge. She has been absolutely determined to raise $1000 and she has finally done it.

An extreme athlete and an extremley wonderful woman!!

Thank you Veronica!

The running total is: $9884.57

Tour De Sierra Update

2009-11-29T22:04:00.005+11:00

We have received another $473 in donations this week from the Tour De Sierra team!!

How terrific. Great work guys!!

Running total is: $8884.57

Conrad and Kim

2009-11-29T21:24:00.004+11:00

I have the priviledge to know great people. Conrad and Kim are an excellent example. Kim is studying full time to be a Chartered Accountant, Conrad is working full time leading transformational programs in large organisations all over Australia and they are bringing up two children. In their spare time...just kidding!!

Conrad felt especially moved by the opportunity to give Sierra access to language. By leading the programs we lead perhaps we are more tuned in than most to language really being our access as human beings to everything. We even think and dream in language! By giving Sierra this computer which will give her access to using words and actually speaking, we really are opening up the world to her.

Thank you Conrad and Kim for your generous donation.

The running total is: $8411.57

Tracey and Gary

2009-11-29T21:06:00.005+11:00

Unfortunately my friend and colleague Gary, died earlier this year. It was a horrible shock for everyone especially his gorgeous wife and children. We all miss him greatly.

Before Gary got sick these two beautiful people had decided they would support Sierra as long as they could.

Tracey made a generous donation, on both their behalf, of $300.

Thank you Tracey. You are a pillar of strength and an inspiration to us all. I greatly appreciate your generosity.

The running total is: $8311.57

Capital to Coast Bike Ride - Cycle for Sierra

2009-11-28T10:51:00.005+11:00

My friend Adam organised the Capital to Coast Bike Ride in July to raise money for Sierra.

"I am cycling 60 miles to raise money for his friends' baby who was born with severe Cerebal Palsy.I bought a bike a couple of weeks ago after not cycling for many many years and have decided that this would be an appropriate way to get some hours in on the bike, make a difference in a little girls life and the lives of her parents, my friends."

Adam raised £473 = $860

Thank you: Jacqui Gilliatt, Caro Monaghan Pauline O'Grady, Robert William Ross Walker, Janet Berenson, Tui Mcclelland, Tiffany Mills and all others who donated and participated.

The running total is: $8011.57

Carer Adjustment Payment

2009-11-27T14:54:00.004+11:00

Well done Shaney!!! My gorgeous husband Shane applied for a one off grant from the government called a carer adjustment payment. This is a big deal because he had to really build a case for, "why us".

We got $2000 to put toward the computer.

The running total is: $7151.57

Mystery Mark

2009-11-27T08:08:00.005+11:00

The day before 13 crazi yogi's did all 5 classes in one day mystery Mark came into the Fitzroy studio. He was looking around the Sierra fundraising desk then went over to Michael and Susan and said, "I'd like to donate, how do I do that?" Michael said, "You can give the money to me." Mark pulled out a wad of cash. Michael was expecting him to pass over one $50 from the top, instead he handed over the lot!

Susan and Michael were too embarassed to count it at the time but as soon as Mark left they discovered he had donated $500.

The very next day it was "All 5 Classes" day. Shane and I had Sierra with us in the studio so people could connect with her. I was sitting in front of the computer and I heard Susan say, "Karen this is Mark!!"

I said, "Oh Mark...Here is the child and here is the computer." I shared with him about Sierra and showed him how to use the computer. Of course we also thanked him for his generous donation.

After that next class, totally unexpected, Mark came out and gave Michael another $500!!!!

Thank you mystery Mark. Our running total is now: $5151.57

Scottish Tom McKenna

2009-11-25T13:39:00.008+11:00

I was practicing on Monday night wearing a new outfit. To my embarassment the top was not as supportive as I would have liked and I was quite distracted the whole class by trying to stay in it!

Straight after class a gentleman walks up to me and says, "Can I have a word to you, Karen, upstairs?" For a few moments I thought he was going to have a few words with me about how outrageous my top was but I also thought perhpas I may have been exaggerating things and I was - Phew!

Tom took me aside and explained that he wanted to make a donation. He had some money that was owed to him that he had written off. However, the woman who owed it to him came through. He thought, "It's money I thought I didn't have", so he asked her to domate it to us. It is $1000!!

Now our running total is: $4151.57

Ruby, Ruby, Ruby, Ruby!

2009-11-23T23:13:00.006+11:00

This is a copy of an email Paul received today after completing the Tour De Sierra:

Hi Paul,

Thanks for a fabulous morning I enjoyed every minute . What a great bunch too....

I've been on to the website and made a donation , as well as sent an email to a whole host of friends and colleagues , so hopefully that will bring in some more money.

Also, Ruby , my daughter is turning 7 year tomorrow.

I told her about Sierra and asked her how she felt about asking her friends to donate to Sierra's computer rather than buy her a birthday present. She thought it was a great idea and was so excited she could do that for Sierra. She actually said " I dont need any presents mum, Sierra needs the computer more than anything".

Bless! She even went to school today with some posters and a box to collect some money... She came home with around $25!!! She asked teachers and her friends to donate their slushy money ! very sweet , Im so proud of her.

Thanks again, and see you soon.

Kathryn

With Tour De Sierra complete and All 5 Classes complete we have a running total of: $3151.57

Tour De Sierra Completed!

2009-11-22T22:40:00.008+11:00

Paul and his friends completed Tour De Sierra today and raised $2150!!

"Nine riders set off. They took 5 hours to complete the 100km, which included a drink stop or two, some boot repairs and some quick first aid to a graze obtained by Danielle."

Check out the rest of the photos:

http://adfins.com/TourDeSierra/Tour_De_Sierra/Photos.html

Great job Paul!!

Crazi Yogi's doing all 5 Classes in one day!!

2009-11-16T08:17:00.004+11:00

Last year a group of 5 people did all 5 classes in one day to raise money. Inspired by their efforts, this year the group expanded to 13 people!!

We asked people attending class on the day to make donations to support us and we raised $905. (There will also be the amounts that some of those yogi's got in sponsorship from their friends in advance that they will now collect.)

It was an inspiring day. Not only for those who did all 5 classes but everyone who participated in the day. Many teachers came and did one of the classes to support. There were the lovely teachers who kept us going with their terrific classes and made great announcements. It gave people an opportunity to connect with Sierra and Shane over lunch. There was also the breakthrough for all people who participated in putting mind over matter and taking new ground in their practice.

Thank you everyone. I feel so moved by the community that we are.

Tour De Sierra

2009-11-14T14:26:00.013+11:00

One of my favourite people in the world, Paul Robertson, has kicked off challenge month with Tour De Sierra.

It is 100km Cycle with his bike club to be held on November 22nd.

J o i n t h e 1 0 0 k m C y c l e f o r C h a r i t y:
Spit Junction • Chatswood • Hornsby • Bobbin Head • Church Point • Manly • North Head • Mosman

Check out the link: www.adfins.com/TourDeSierra

Love the name!!

It's Challenge Month Again!!

2009-11-14T14:19:00.003+11:00

Hi all,

Last year one of the ways we raised money for all our fabulous trips was by holding a November Challenge Month.

The idea of the month is that anyone can create their own challenge and get sponsorship from their friends, family and colleagues for participating. The overarching challenge is the 30 Day Bikram Yoga Challenge at Bikram Fitzroy but last year and this year we have people all over the world creating challenges of all kinds to raise money.

We are raising money for a computer that will allow Sierra to communicate. The price is $25,000 and the Government will give us $4400 only.

We are aiming for $20,600.

Update of Results from all our Fantastic Trips!

2009-11-14T11:55:00.005+11:00

#4 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offerred OS.

July 09: We returned to Europe to do a second Stem Cell treatment, see Anel and Tereza for Physio and see the Neurosurgeon and Eye Doctor.

This trip also went well but was clouded by Sierra's increased epilepsy. We have just recently got back on top of the epilepsy by using new medication but this has been a big stop this year since returning in July. It took many months to find the right medication and I was impacted quite a lot by the worry of it all. This has prevented me updating this blog until now.

The good news is that the results of the trip were very powerful.

The stem cell therapy gave Sierra better fine motor skills and she began saying Mamma and grasping especially with her left hand. We also gave her botox all over her body so her muscle tone is much better and she started bringing her arms forward more and that helped her to take her arm over her body and roll. For awhile she was rolling on both sides but now mainly to the left. These are all MAJOR breakthroughs for a child like this!!!!!

The neurosugeon who applied the botox has never met Sierra before and after some assessment confirmed what so far all the therapists say, that she is intelligent.

The eye doctor confirmed that Sierra's vision has improved again. Now we must use glasses again but this time to make both eyes work in a co-ordinated way. At the moment she uses one eye or the other - silly girl!

We feel very proud of what we have accomplished in these 2 years and feel that we have given her the best chance we could at her being independant as she grows up. All the movements she has learnt will really help although we will always have to keep her practicing.

The next most important thing for us to focus on will be language and communication.

Update of Results from all our Fantastic Trips!

2009-11-14T11:41:00.003+11:00

#3 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offerred OS.

December 08: We returned to Europe for Stem Cell treatment, more Physio and to see the Eye Doctor. The trip was a success and there has been some significant improvements!

There has been a reduction in spasticity/tone (tight muscles) all over her body. Her hands are now frequently open and relaxed instead of being in tight fists. We can bring her arms forward to touch her elbows together and can also take her arms behind her in a full range of motion for the first time. We’ve heard the joints clicking as they open up. Both the physiotherapist in London and the one in Prague confirmed the reduction in tone. The best part is, unlike Botox, it’s permanent.
Benefits:
- It’s much easier to move and learn normal movement if muscles are not tight. The arms have especially benefitted as they were the tightest area. This will give Sierra better access to communication at this early stage, by touching picture icons of what she wants, playing with toys and later through a computer. All of which requires the arms coming forward and hands being open

Sierra’s vision has improved dramatically this year. She has gone from having no ability to focus to having almost normal vision. It’s as good as saying she was blind and now she can see!! In March we introduced +3 glasses and in July, contact lenses. The lens is supposed to entice the brain to learn to focus. This is progressive therapy compared with Australia and the UK but the Eye Doctor in Prague does this treatment with hundreds of children and is very surprised about the progress Sierra has made. When asked by our friend who was translating, “Really?”, the answer was “Really! Much more than the usual improvement, a real leap forward in her vision”.
Benefits:
- The exciting thing about vision is that communication really relies on Sierra being able to see and see well because she may not talk and if she does it may be delayed. With vision she can use a computer to communicate and this gives her access to normal schooling
- 80% of all movement in small children is learned from vision

Sierra’s mouth has gained better movement and control. Sierra’s type of Cerebral Palsy encourages her to extend. This means involuntarily pushing herself back and at the same time extending her arms and legs as well as her tongue. The tongue was previously in extension a lot of the time which is both unattractive and very limiting for learning to talk. Her tongue would almost always only go forwards in a thrusting motion or back into her mouth. It almost never made an up and down motion or side to side motion which is what you need to be able to talk. The pushing has greatly reduced all over the body and the tongue thrust has greatly reduced also.
Benefits:
- A chance at speech
- Better able to eat normal foods with more adult textures
- Better appearance, not looking as disabled

From working with the Physio in Prague and in London (both coming from different disciplines) we got great input in where to take Sierra next with the physio “home program”.
- We will be focusing on re-learning to roll. Sierra was rolling in October then went into hospital with a virus. At this time she stopped rolling and hasn’t rolled since. It was about this time that her epilepsy became more severe. Every time we tried the type of physio that focuses on rolling and crawling it gave her seizures. Tereza (Sierra’s physiotherapist in Prague) has shown us ways to work with Sierra that should allow us to treat her and not cause the seizures or not nearly as many. We are committed that she has some floor mobility.

- We will also be focussed on Sierra taking weight through her arms and legs, with the emphasis on the arms. If you imagine for a moment that you were disabled and I had to move you, think how much easier it would be if you could take weight through your legs and arms so you could hold your body for a few moments or minutes while I transition you from one position to another or actively push up with your arms to help me take your weight. Anel (Sierra’s physiotherapist in London) has been working with us last week to get Sierra to actively push up and hold herself with straight, strong arms. Serra is doing really well at this and her head holding is improving at the same time.

The fact that there has been a reduction in spasticity indicates that the stem cells found the damaged area and so we should continue to see improvements. Both Shane and I are very happy with the results and what we’ve accomplished.

Added Bonus!!
Also, while in London Sierra became ill and that usually means a hospital stay. Shane and I took Sierra to A&E with our bags already packed, resigned that it was going that way. However, the doctors looked at Sierra and decided she was hydrated enough to try to get over it at home. We gave her rest, Vitamin C and Panadol and she managed to keep eating and drinking. Usually, I suppose because of the effort it is for her, Sierra’s mouth goes ‘on strike’, she gets dehydrated and we have to get her fed via a nasal tube until she recovers. This time she kept drinking and eating perhaps because of the better mouth control. It was such a WIN to have her turn it around. For the first time she turned an illness around herself!

Update of Results from all our Fantastic Trips!

2009-08-08T14:17:00.016+10:00

#2 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offerred OS.

Trip 2 July 2008: we went over to Europe again. This time for Physiotherapy with Anel in the UK's Bobath Centre, to spend 3 days with Tereza in the Czech Republic for Hippotherapy and Vojta Physiotherapy, to see Dr. Zivny for Botox and Dr. Anna Zobonova for an eye appointment - both in Prague, then go to Cologne in Germany to meet Dr. Angy Etou to discuss the possible use of Stem Cells at the XCell-Centre.

We now refer to this trip as "The Vomit Trip". Sierra had very bad reflux anyway and when she was unwell this accentuated the vomiting. She wasn't really well enough to travel this time but it was then or in another 6 months. For a child like Sierra, every day counts between 0 - 3years of age. We couldn't wait. We just did the best we could to keep her as well as we could but she vomited everywhere we went!! It was awful. To this day I look back at how challenging this trip was but then I remember, if we hadn't gone, Sierra would not have vision!!

Benefits: Bobath: We started in the UK with Anel at The Bobath Centre where as planned she gave us a good 6 month physiotherapy home program.Tereza: When Sierra was on the the horse for the Hippotherpay it was determined that she didn't need Botox after all. It took Tereza a lot to convince me. I thought the Botox was one of the main reasons we had come to Europe - it's not offerred in the same way in Australia. I was afraid about leaving for 6 months and finding we had chosen incorrectly.
Tereza also gave us some corrections to the Vojta physiotherapy which was usual but what wasn't usual was Tereza's style. She had been influenced since our previous visit to do a more gentle style of Vojta which is commonly known to be tough and demanding of children, making them cry. This shift in style has been one of the main reasons we have been able to continue the Vojta as time goes on. Only 30% of parents contiue with Vojta therapy despite it's outstanding results, due mainly to the baby's crying.

The BIG SURPRISE of this trip was the eye appointment: Sierra's eyes had started to really improve from the use of the glasses so Dr. Zobonova suggested we move to using contact lenses. Shane and I were so shocked. "Contact lenses on a baby!!!" We trust this doctor immensly and the glasses were clearly working so we thought we'd try the contacts. Apparently the contact lenses work a LOT better than the glasses because the child can wear them all the time including throughout therapy when you need the child to be motivated the most.

Dr. Angy Etou: The XCell-Centre Stem Cell clinic was clean and modern. Angy was surprisingly direct about the lack of case studies for children like Sierra but thought we had about 60% chance of having some result and 40% of no result but NO CHANCE of going backwards. Shane's parents were with us and we all thought it worth giving a try so planned it for December 2008.

At the end of this trip we were all exhausted but we had made progress especially with Sierra's vision. Before glasses Sierra had next to no ability to focus. Vision is the most important thing for a child with a severe disability because unless they can see there is little motivation to move. Now we had proof that her vision was improving from using a +3 lens and we were leaving with a 6 month supply of +3 contact lenses.

We also had the commitment to come back in December to try Stem Cell...

Update of Results from all our Fantastic Trips!

2009-08-02T16:14:00.017+10:00

#1 For those of you who have just joined, Shane, Sierra and I moved back to Australia from England for a steady income and so we could have help from our family in February 2008 and have since done 4 trips back to the UK and Europe to get the best possible care for Sierra. While care in Australia exists it does not compare with what is offerred OS.

Trip 1 March 08: We picked up her disability chair, saw the physiotherapists Anel and Teresa for additional guidance on how to keep Sierra progressing, got input from Dr. Zivny about her overall condition and a prognosis and visited Dr. Zobanova for an Eye Appointment.
Benefits: The chair has been confirmed by the disability chair providers in Australia to be the best make in the world and it has been a saviour for us. Sierra can not sit unaided and needed something sophisticated to enable her to be able to do basic things like bring her arms forward and play. You can see her enthusiasm from the photos taken when we first arrived back - she had never been enabled to do this kind of play before without expert handling from physiotherapists. Even Shane and I could not hold her body in such a way that she could bring both arms forward to play because of her difficulty in holding her trunk and head.
The glasses took Sierra from having virtually no ability to focus to some ability to focus. The idea is that by using a +3 lens you entice the brain to learn to focus. This sometimes works and sometimes doesn't but with Sierra it did! Physiotherapy is the backbone of everything. Both Anel and Teresa know Sierra well and gave us guidance on how to continue for the next few months. The physiotherapists we have in OZ do the same style so each compliments the other.

A New Level of Development

2009-07-26T00:08:00.004+10:00

Shane and I have observed that Sierra is making better sounds, more interesting sounds. While in Prague the doctor WITHOUT hearing what results we were seeing from the Stem Cell said that the next things for us to focus more on is getting Sierra to grab things. He said when a child starts grabbing they also start saying some words. He said this is a level of development that a child reaches. The two go together. It's amazing because I could not work out why I was only seeing results in Sierra's hands and tongue/ mouth, it seemed so unrelated.

Tricky Fingers

2009-07-12T01:28:00.005+10:00

The latest on Sierra's results are...since this second stem cell treatment we have seen a further reduction in tone in her upper body. I'm noticing she is moving her fingers independently for the first time and reaching out with open hands to clasp my arm or my hand. It's SO cute to feel her little hand gripping my arm and squeezing me.

Tiffany, Dave and Zannah

2009-07-12T01:16:00.003+10:00

When I put my film on facebook I was not sure what I was going to do about another fundraiser and was using the film as a starting point. I didn't have much hope of getting people's support because I find it VERY difficult asking people for moeny.

Within 24 hours I received a call from Tiff and Dave. "We are in Melbourne can we come over and look at Shane's paintings? We want to buy one as a donation to your fundraiser."

I was so surprised. However, this is what gave me the confidence to continue with this fundraiser.

Unfortunately the painting was too big to transport from Melbourne to Sydney so they have donated regardless. Thanks guys!!

The running total is now: $16,415

Mystery Man

2009-07-12T01:13:00.003+10:00

I met a man on an aeroplane named Arthur Spanos, who later donated $2000.

Thank you Arthur for your extraordinary generosity!

Stay tuned to hear more about the results Sierra receives.

Make May Your Mat Hire Month Too

2009-07-12T00:51:00.004+10:00

Thank You Milli from Bikram, Yoga Tree and for the donation of $193.

Thank you Samantha from Bikram Yoga Brisbane for the donation of $565.

Both these schools participated in the Make May Your Mat Hire Month. Every bit REALLY helps and we are very thankful for your participation.

The running total is: $14,215

Looser and looser baby

2009-07-08T20:01:00.004+10:00

Hi all,

We had our first appointment at the Bobath Center yesterday and had some great news. Anel (physiotherapist) who hasn't seen Sierra for 6 months and has known her since she was 8 months old so is very familiar with the level of her spasticity, says she is much looser than she's seen previoulsy. Sierra has grown a lot and ordinarily this would mean she'd be tighter because the muscles don't lengthen. However, Anel says that in some parts she feels normal or even low tone. The only thing that could have affected this is the stem cell treatments because we have not used any botox.

So that's just fabulous!

Technical Difficulties!!

2009-07-08T02:27:00.006+10:00

Apologies for the delay we have had some technical difficultis in creating new posts.

Now that I am up and running again I will make some announcements regarding new donations.

We are in the UK now.
Shane and Sierra had the stem cell in Germany last week and this week we have begun intense Physio at the Bobath Center to get the most out of the new neural pathways that are being newly connected from the stem cell.

So far we have noticed Sierra is talking a LOT more. She seems to be making a lot of noise. She is really chatty, it's amazing. Previously she would make noises but these are more interesting and varied.

I'll keep you updated on any other progress. Fingers crossed!!

Lovely Aunty Marj

2009-06-14T11:08:00.004+10:00

This is a picture of my Mum and my lovely Aunty Marj on her 89th birthday.

Thank you Aunty Marj for your kind donation of $500. The running total is now $13,457.

Make May Your Mat Hire Month

2009-06-07T20:12:00.017+10:00

Bikram Yoga Fitzroy has announced their Make May Your Mat Hire Month Total is $1487

Thank you Michael and Susan. Your generosity is amazing!!

Bikram Yoga Darlinghurst has announced they raised $618 from Mat Hire. Darren and his partner are contributing the difference to make it an even $1000. Thank you Darren - Wow!!

We are now over half way to our target of $20,000. The running total is $12,957.

Sierra's Sunday Sausage Sizzle

2009-06-07T19:15:00.008+10:00

Thank you Monique, Evan & family, Neil, Paul & Kerry for cooking sizzling snags all day long.

Monique heard about our fundraising efforts through an annoucement we made at the Glen Waverley Bikram Yoga Studio. A few weeks later my Mum (who has now taken over the fundraising - Thank You MUM!!) called Monique to see if she was still willing to help. Monique said, "Yes, we can do a sausage sizzle but you'll need four people to man it all day and you have to decide right now". Nervous about where I would find four people Mum said, "OK". This was the Friday before the Sunday!!

Thank goodness for the support of our firends who stepped in with very little notice.

Apparently, it took everyone three washes to get all the grease out of their hair!

They raised a fantastic $970.

We are almost half way there.

2009-05-18T23:58:00.010+10:00

Thank you very much:
Shirley & Dan McAlpine, Nicola Jane Dexter, Tania & Kevin McLean, Fiona & Imran Shah, Susan Ribeck & daughter, Damien & Amanda Maguire, James Fleming, Samuel McGlennon, Jonathon Ekstrom, Marion McChesney, Rubi & Stu Solomon, Beloise Fin, Carol Goddard, Michael Kahane, Benjamin Langmead, Kate Mercer, Sarah Hockley, Indigo Group, Jamie Oliver, Tom, Max, Miller & Jodie Freeman , Kate Allan, Zubair Zakir, Doug Fisher, Tom & Loretta Cotter, Andrea Devine, Mark Hayford, AF Coxhead, Simon Cooper, Kathy Gepp, Clifford Harris, Shingadia BN, Neil Gibb and Alison Proud.

The Running Total is: $9500

Designer Handbag Donations...

2009-05-18T23:13:00.006+10:00

Loredana kindly asked her friends to donate money to Sierra this year instead of buying her a designer handbag that she says she didn't really need!!! I can't comment about whether she needs the bag or not but her 30th Birthday gift money has started a trend...

Jake Wyatt kindly donated his birthday money and Laura Kahane asked her husband to donate to Sierra instead of buying her a Monther's Day gift.

Thank You:

Jacqueline Scarr
Emily Martin
Jenny White
A. Minns
Vanessa Bonney
Jake Wyatt
Laura Kahane

I feel humbled by these glorious people. The total from their efforts is:$600

Fundraising Tea Party for Sierra

2009-05-18T22:39:00.006+10:00

Thank you Rachel Heavens for your fantastic fundraising idea of having a tea party.

Her party raised a total £337.85!
Even people who didn't attend donated.

Everything looks so yummy!
Well done Rach.

Thank you Grantham family - Molly, Mick, Jim, Eve, Rose and Partners

2009-05-10T23:27:00.012+10:00

Thank you so much Carol and Mick for organising such a generous donation from your family!!

We feel touched by your compassion and willingness to contribute. We'll let you know how the treatment helps Sierra.

The Granthams donated a HUGE $4000!

Our running total is now $7,350

Thank you Bikram Glen Waverley and South Melbourne

2009-05-05T01:21:00.003+10:00

Thank you Bikram Glen Waverley and South Melbourne for your generous donation from Mat Hire of $1900!!!!!

You have gotten us started with this fundraiser which we were SO STOPPED with. It is difficult to get out and ask people to contribute to your cause. Maggie, thank you for your fantastic email to all the studios. With four schools participating this will make a big difference.

The running total is $3350

I just heard the most fantastic news...

2009-04-23T08:29:00.005+10:00

Bikram Fitzroy is donating their May Mat Hire!!

This means we have both Bikram Glen Waverly and Bikram Fitzroy donating. Absolutely fantastic news!!!

Another donation!

2009-04-20T20:18:00.003+10:00

Another donation has arrived of $350. Elisha, thank you for emailing your friends and asking them to donate. You are a hero!

The runnning total $1450

Update!

2009-04-18T15:03:00.002+10:00

Hi all. Another two donations have arrived!! Thank you Jake Wyatt for £200 and Ellen Riches for £100.

We now have approx $1100. This is a good start.

We have also taken the leap and bought the plane tickets and booked the therapists.

Getting closer

2009-04-10T00:00:00.002+10:00

Hi all!

We now have $548 in the piggy bank.
Thank you for your donations.

What we REALLY need is someone or some people to offer to hold a fundraiser in May. It is getting very close to July and I have the tickets and the therapy booked - but no money to pay for it.

Please let me know on this blogspot by entering a comment if you can help.
We thank you in advance for your donations and support.

Warm regards & happy easter,

Karen, Shane & Sierra

It has begun!

2009-03-22T23:14:00.006+11:00

It has begun...We have now raised $230.
I've come to realise a lot of small amounts make a bigger amount.

Thank you to those who started the ball rolling!!

Sierra Video

2009-03-14T06:41:00.020+11:00

To read the article about Sierra in last saturdays The Age please visit http://www.theage.com.au/national/high-hopes-for-tiny-cells-20090313-8xxt.html

Three months to go

2009-03-14T03:45:00.000+11:00

Sierra needs to raise AUD$20,000 before June 2009 to get to Germany for promising stem cell treatment whilst it can still be most effective. The procedure is currently not available in Australia but with more examples of successful therapy this hopefully will change. I am committed to bringing the stem cell treatment to Australia and will do whatever it takes.

Until then...

we have three months to go to get Sierra to Germany to receive the treatment. We haven't raised any money so far.

Please help us by donating to our paypal account.

We are also looking for someone to offer to do a fundraiser for us.

We thank you in advance for your support and donation.

A big thank you to Pia Niebel of Light Puzzle Media and James Fleming of Rockmelon Films for their pro bono support in making the clip and helping with the website.

Karen, Shane & Sierra

Obama Lifts Bush’s Strict Limits on Stem Cell Research

2009-03-13T23:50:00.000+11:00

New York Times, Published: March 9, 2009

By SHERYL GAY STOLBERG
'WASHINGTON — Pledging that his administration will “make scientific decisions based on facts, not ideology,” President Obama on Monday lifted the Bush administration’s strict limits on human embryonic stem cell research. ...'

Read the full article

http://www.nytimes.com/2009/03/10/us/politics/10stem.html?_r=1&hp

Successful 1st Stem Cell Treatment - Dec 08

2009-03-13T22:20:00.000+11:00

Hi everyone,

We’re back home now and are pleased to say the trip was our most successful yet. The planning and preparation paid off and the travelling went smoothly. We enjoyed seeing our friends (and family!) in London and the consultations with the specialists we see were very productive and positive. Here’s an update of the results:

As a result of the Stem Cell treatment Sierra has shown some significant improvements.

· There has been a reduction in spasticity/tone (tight muscles) all over her body. Her hands are frequently open and relaxed instead of being in tight fists. We can bring her arms forward to touch her elbows together and can also take her arms behind her in a full range of motion for the first time. We’ve heard the joints clicking as they open up. Both the physiotherapist in London and the one in Prague confirmed the reduction in tone. The best part is, unlike Botox, it’s permanent.
Benefits:
- It’s much easier to move and learn normal movement if muscles are not tight. The arms have especially benefitted as they were the tightest area. This will give Sierra better access to communication at this early stage, by touching picture icons of what she wants, playing with toys and later through a computer. All of which requires the arms coming forward and hands being open

· Sierra’s vision has improved dramatically this year. She has gone from having no ability to focus to having almost normal vision. It’s as good as saying she was blind and now she can see!! In March we introduced +3 glasses and in July, contact lenses. The lens is supposed to entice the brain to learn to focus. This is progressive therapy compared with Australia and the UK but the Eye Doctor in Prague does this treatment with hundreds of children and is very surprised about the progress Sierra has made. When asked by our friend who was translating, “Really?”, the answer was “Really! Much more than the usual improvement, a real leap forward in her vision”.
Benefits:
- The exciting thing about vision is that communication really relies on Sierra being able to see and see well because she may not talk and if she does it may be delayed. With vision she can use a computer to communicate and this gives her access to normal schooling
- 80% of all movement in small children is learned from vision

· Sierra’s mouth has gained better movement and control. Sierra’s type of Cerebral Palsy encourages her to extend. This means involuntarily pushing herself back and at the same time extending her arms and legs as well as her tongue. The tongue was previously in extension a lot of the time which is both unattractive and very limiting for learning to talk. Her tongue would almost always only go forwards in a thrusting motion or back into her mouth. It almost never made an up and down motion or side to side motion which is what you need to be able to talk. The pushing has greatly reduced all over the body and the tongue thrust has greatly reduced also.
Benefits:
- A chance at speech
- Better able to eat normal foods with more adult textures
- Better appearance, not looking as disabled

From working with the Physio in Prague and in London (both coming from different disciplines) we got great input in where to take Sierra next with the physio “home program”.
- We will be focusing on re-learning to roll. Sierra was rolling in October then went into hospital with a virus. At this time she stopped rolling and hasn’t rolled since. It was about this time that her epilepsy became more severe. Every time we tried the type of physio that focuses on rolling and crawling it gave her seizures. Tereza (Sierra’s physiotherapist in Prague) has shown us ways to work with Sierra that should allow us to treat her and not cause the seizures or not nearly as many. We are committed that she has some floor mobility.

- We will also be focussed on Sierra taking weight through her arms and legs, with the emphasis on the arms. If you imagine for a moment that you were disabled and I had to move you, think how much easier it would be if you could take weight through your legs and arms so you could hold your body for a few moments or minutes while I transition you from one position to another or actively push up with your arms to help me take your weight. Anel (Sierra’s physiotherapist in London) has been working with us last week to get Sierra to actively push up and hold herself with straight, strong arms. Serra is doing really well at this and her head holding is improving at the same time.

The fact that there has been a reduction in spasticity indicates that the stem cells found the damaged area and so we should continue to see improvements. Both Shane and I are very happy with the results and what we’ve accomplished. Thank you very much for being part of getting us over there.

Added Bonus!!
Also, while in London Sierra became ill and that usually means a hospital stay. Shane and I took Sierra to A&E with our bags already packed, resigned that it was going that way. However, the doctors looked at Sierra and decided she was hydrated enough to try to get over it at home. We gave her rest, Vitamin C and Panadol and she managed to keep eating and drinking. Usually, I suppose because of the effort it is for her, Sierra’s mouth goes ‘on strike’, she gets dehydrated and we have to get her fed via a nasal tube until she recovers. This time she kept drinking and eating perhaps because of the better mouth control. It was such a WIN to have her turn it around. For the first time she turned an illness around herself!

Warm regards,

Karen, Shane & Sierra