Ella is our 9 year old superstar who has CMT (Charcot Marie Tooth). She was diagnosed aged 3 and since then has suffered with quick progression effecting her legs, feet and hands. CMT is a form of muscular dystrophy - there is no cure, we can only treat the symptoms. There are many many subtypes of CMT and it's effects differ hugely in those who have the gene.
At the age of 5 Ella had a huge 5 hour surgery to help relive the effects of CMT in her feet. She had both feet operated on with muscle releases and tendon transfers.
Ella wears splints on her legs in order to be able to walk, she's a busy girl and these are so important to keeping her moving. After a battle with her feet Ella’s hands began to deteriorate and she faces new challenges in adapting to everyday life.
Ellas hands continue to cause her problems and they are now in a permanent claw position. She still has some function but she is unable to stretch any of her fingers or use them normally.
Ella has had her current self propelled wheelchair for about 5 years and requires a new one as she continues to grow. Ella is maintaining mobility but we have to monitor the amount of activity she does. She has her good and bad days but generally can manage at school without the use of her wheelchair. However her wheelchair is essential for her to maintain independence and not miss out on all the awesome experiences in life. We regularly take days out and travel to London to see family and even just a regular day out (trip shopping or long dog walk) requires a wheelchair. She cannot manage long periods of standing or walking and sometimes when her leg splints are causing bother she is fully reliant on her wheelchair.
Our local authority is now no longer able to provide a wheelchair for Ella as she does not use a wheelchair in order to mobilise in her own home. This criteria is set by the local Clinical Commissioning Group and although we have appealed and there are ongoing complaints this has not changed in the last year.
Ella does not require a full electric wheelchair, however we have found an amazing e-motion wheel which allows Ella to self propel with minimal grip and power, something that is so important with the deterioration in her hands.
We are seeking charity funding to help us with the cost of the wheelchair we require for Ella. However there are of course waiting lists and we would also like (and may indeed need to as part of terms) to contribute to the cost of the wheelchair. The total required is £7282!
All help in our fundraising journey is hugely appreciated
Any amount of money we raise will be used for Ella's wheelchair in combination with charity funding.
- Anton Matwijczuk
- Sarah Jackson
- Elizabeth Martin
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