Goodbye 2014

The year is coming to a close and I couldn't be happier with how things are. 1. We pushed through and Sierra is now welcome at Doncaster Primary school to attend year 1 with same two aides she had last year 2. I demonstrated success at work and am now being related to as a reliable senior member of our team 3. Shane and I are in love and a solid team facing into our future together 4. I see the possibility of expanding my impact as a yoga teacher in Australia and the UK 5. I have a community of incredible friends across the globe to put wind under my/ our wings...

In 2015 we can build from this platform in all areas and also reach 200 Sierra's Amazing Angels contributing at least £10 a month such that we have sustainability in 2015 and moving forwards

200 Amazing Angels Appeal

Sierra's 200 AMAZING ANGELS Appeal has begun!

We now have 40 people contributing £10 per month.

I had thought that I wouldn't have to come back and do another fundraiser after we went through official channels last year (Govt. And Dept. of Education).

Truth is, there's just insufficient funding for people like us. Simple as that. And Sierra's needs are very high. She's an extreme case.

It is disheartening to be reaching out to people again and at the same time it's wonderful to be surprised by so many warm hearts and generous spirits. 

Love 

Reality Cheque

Yesterday, time stood still while I watched the Doncaster Primary School Principal, Sierra's teacher and another staff member read through 7-8 different wads of paperwork, all with several highlighted sections outlining how the school are not able to meet Sierra's needs. Their answer is to send her to a "special school"; everything Shane and I have stood for slipping through my fingers and all I could do was listen and hear them fully. The bottom line is that we have not had the money to pay $300 per week, for bi-weekly $150 appointments for Speech and Language, Physiotherapy and Occupational Therapists to go into the school and train the school aides. The CPEC (Cerebral Palsy Education Centre) advocate that came with us to the appointment has worked for years in special schools. For several years she has helped integrate children, like Sierra, into mainstream schools and firmly believes Sierra is intelligent and perfectly capable of being in mainstream school. But without funding, she cannot remain there. A line in the sand has been drawn. Shane and I have until Tuesday to work out an acceptable solution.

I have called a meeting with some of Sierra's Angels tomorrow to discuss a possible fundraising campaign to raise £25K annually by having people contribute a monthly donation.

Last year I pulled out all the stops and went for all the public funding I could find. Shane was fatigued and after years of people suggesting, "There must be something that the government can give you?!" and asking, "Well isn't that funded by the government or something?" I went for it and I exhausted every funding body I could find in Australia and filled in every funding application I could find in Victoria to give Shane, Sierra and I a better quality of life. It helped with the funding of some respite and a couple of pieces of equipment.

We were also allocated the level 6 (maximum) funding for school, and were accepted on the disability support register with the government (money we won't see for years because we have to wait for someone to pass away to get allocated their amount and at the high rate that Sierra needs only 3% of people ever get allocated at all.....straight from the mouth of the DHS government representative himself).

It had to be done and if I hadn't gone full out in this direction, we wouldn't have found our incredible carer Melissa. And Sierra would not be in mainstream school.

On the other hand, it had a significant impact on my health and nearly cost me my job with the hours I dedicated to making it all happen.

Shane and I are exhausted and with a huge appreciation for the incredible generosity of everyone who has contributed to Sierra's quality of life!

Currently we have no further physiotherapy, speech and language, occupational therapy appointments booked to help the aides in school with how to help Sierra learn, sit safely, avoid contractures and sores from sitting all day, changing her and supporting her using her communication book and computer due to no further funding availability. Unbelievably there is virtually NO funding available for kids between 7-13 years old. In addition, there are the O/S trips to train our carers and work with the UK physiotherapist who creates a home physiotherapy program and to visit the European doctors (all who provide additional input or therapy that we have not found here).

I had believed that if I actually did the work and approached all those funding bodies that people said "must be out there" and went to the government and actually lodged the DSR, I would not have to come back to my friends and family again.

It breaks my heart that with everything that people have given us over and over again that we don't have what we need.

One of the initiatives that a Sierra Angel came up with once was a £10 a month scheme. On reflection it is by far the best idea overall. I have approximately 15 people who contribute in this way. This has benefitted us is that when Sierra and I do the O/S trips there has been money in the UK account to pay for the physiotherapist and other appointments. I am now proposing we extend this initiative to cover all of Sierra's therapy.

Why I like this initiative the most is because it's sustainable and if someone asked me to participate in this way I know I would if I believed in the cause. 

If you are willing to help or ask others to do this you will see at the bottom of this blog my account details for both Australia and the UK. Any annual, monthly or weekly amounts will be greatly appreciated.

My target is £25K annually because it really does take that and more.

That's just over 200 people at £10 per month.

Closer and closer

There are a few days left until Sierra starts school and still so much to get across the line. 

The beautiful Maggie Carr raised money on Christmas Day to help fund the training of school aides in the first two weeks of school, Sierra's new chair was delivered, her standing frame money and full funding for school (to pay the school aides) came through BUT there is so much more to manage yet.

I can not have another year like this. It has taken everything and other important areas of my life have taken a hit. However, this year was necessary and we are on track, we just can't stop that's all and I could really use a break!!

Last leg - Come forward if you can!

Here I am with just a month to go.....People (you) have been amazing to me this year. People (you) have gone beyond, come out of the woodwork and we have raised more money than ever before on equipment, therapy, O/S trips and for the first time respite as well. We now have the beautiful Melissa working for us and I trained Shane's sister Tania (our first family member to be able to fully care for Sierra) earlier this year while in Umbria.

We have also had more hospital stays this year and more set backs than ever before. In February we hit rock bottom when Sierra's hip operation did not go well and they had to re-do the op and she came out of hospital in a constant state of seizure activity, just after being hospitalised in January in status and then in September completely out of the blue Sierra got a flu right on the back of recovering from a chest infection and went straight into ICU. Life stood on a knife edge that night and thankfully she pulled through.

All the while we have remained committed that Sierra would get into mainstream school next year and be able to use her computer. Miraculously and through all our efforts she has been accepted at Doncaster Primary; we will hear any day now the confirmation of full funding, she has three aides and she is using her computer.

There is still another month and one last piece of money to be raised to train the school aides in how to use the computer to give Sierra a voice in the classroom.

Thank you all, and come forward if you can help! 

Love

In the 'Burbs

Saturday in the suburbs and it's ground hog day. Sierra has recently come out of ICU and is back at home with little ability to use her mouth to eat and drink effectively. This is the third time this year I have taught her to drink and eat from scratch. Of course the muscle memory kicks back in at some stage but at the moment I can't get through even one meal without several stops and starts and all the rest of the palava!

This has not been the situation in previous years, 2013 just happens to have been the year of re-starting with eating and drinking and I am now close to insane with it all!!!!

On a better note...we went back to Cerebral Palsy school on Friday - first day back of term and first day Sierra was well enough after ICU. She perked up as soon as we arrived! Big time smiles, full-out participation and showing off was at play. 

And on an even better note ... Sierra had her first day of "transition to primary school" on Friday. All the children attending next year at Doncaster Primary will attend every Friday morning for two hours for the rest of the year. The intent is that when they start next year they are at home with the school environment and each other.

In addition, I now have a fantastic girl who will go into the school along with Shane for the first two weeks of next year and train Sierra's 3 aides. Yes, you did read that correctly ... Sierra will have 3 aides working with her next year!!

Progress is slow but we have progress.....Now come on kid and eat!

Getting back up to fight!

Sierra is recovering slowly from the ICU experience. She's been set back a fair way again..... But we are BACK! 

Sierra will be school ready by January. Not sure how we'll get there from here but it shall be.