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Race for Rupert

Please help Just4Children give Rupert the best care and therapy he deserves to be the best version of himself and enjoy life.
£8000
Total raised
32%
£25,000.00
Target
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2 donations

Race for Rupert

Please help Just4Children give Rupert the best care and therapy he deserves to be the best version of himself and enjoy life.

Rupert, our five year old son lives in Witney. He has an incredibly rare congenital condition called NGLY1 deficiency. There are only 2 people in the UK with this diagnosis. NGLY1 deficiency is a rare disorder that can affect multiple systems of the body. Affected individuals may have delays in reaching developmental milestones and that their lifespans are lilley to be limited.

Rupert’s condition means that he has not yet learned to speak, stand nor walk independently. He has cerebral palsy with involuntary movements, difficulties with eating and drinking and a learning disability amongst a host of other medical complications. In spite of his challenges he has a wonderful sense of humour, he loves books, listening to us sing, watching cars zooming, Zog, Tractor Ted, and his dog Polly.

He has to be supervised 24 hours a day to keep him safe but we are desperate to give him as much independence as possible. The best shot at this is through combined therapies.

We have been fortunate enough to secure a place at an intensive therapy course in London run by the NAPA Centre. Just4Children need support to pay for the course and our accommodation costs so that Rupert can access these life-changing therapies. Hopefully, this will be the first of several courses over the next few years.

https://napacenter.org/locations/napa-center-london/
Rupert’s intensive course includes two hours of specialist physiotherapy and an hour of speech therapy per day for three weeks. We are hoping that he will make great progress with his communication skills and ability to walk independently using a walking frame.

We really appreciate your support, thank you!

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