Sunday, November 29, 2009

Tour De Sierra Update

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

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

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

Saturday, November 28, 2009

Capital to Coast Bike Ride - Cycle for Sierra

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

Friday, November 27, 2009

Carer Adjustment Payment

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

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

Wednesday, November 25, 2009

Scottish Tom McKenna

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

Monday, November 23, 2009

Ruby, Ruby, Ruby, Ruby!

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.


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

Sunday, November 22, 2009

Tour De Sierra Completed!

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:

Great job Paul!!

Monday, November 16, 2009

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

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.

Saturday, November 14, 2009

Tour De Sierra

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:

Love the name!!

It's Challenge Month Again!!

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!

#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!

#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.
- 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”.
- 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.
- 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!