Hello, my name is Sacha, I am 14 and live in Norfolk, UK. I have a genetic condition called Hypermobile Elhers Danlos Syndrome (hEDS), this effects my whole body inside and out.
In August 2025 my consultant said I would lose the use of my legs within 3 to 5 years unless specialist treatment began now. I kind of just accepted this but my Mum didn’t want to. So, Mum set out to find help and stumbled across a local rehabilitation gym Able2B who are helping me keep strong in my weekly sessions.
Able2B work with specialists who assessed me for leg splints that should help strengthen and stabilise my legs.
This is great news but it costs so much money. I will need a new set of splints every 9 months until I have stopped growing, they are £2500 per set.
Mum and Dad spend so much money on my treatment and the equipment I need day to day, these splints are just so much so I decided I wanted to ask for donations to help Mum and Dad out.
If you can spare anything to fund my splints, I would be very happy.
Thank you
Sacha
ps. Here is some more information about hEDS
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