Racing for Rupert

Melanie Thompson is raising money for Just4Children
In memory of Rupert
£1,370
raised of £1,500 target

Tokyo Marathon 2025 · 2 March 2025 ·

Race for Rupert
Campaign by Just4Children (RCN 1164473)
Please help Just4Children give Rupert the best care and therapy he deserves to be the best version of himself and enjoy life.

Story

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

Rupert is one of our best friend’s little boy who has an extremely rare genetic degenerative neuro-metabolic condition called NGLY1 deficiency. There are only around 100 known cases worldwide. He is an amazing little boy.

Rupert's condition and associated learning disability means that he has not yet learned to speak, stand or walk independently. He loves books, listening to us sing, watching cars zooming, Zog, and his dog Polly but he finds his physical and communication challenges to be incredibly frustrating.

We are fundraising to keep sending Rupert to an intensive therapy course in London run by the NAPA Centre. Just4Children need support to pay for the courses so that Rupert can access these life-changing therapies. These intensive therapies are helping him to make great progress using his electronic talking device to communicate his needs, and in helping him to learn to use his walking frame. Both of these outcomes will greatly increasing his quality and enjoyment of life.

At his most recent intensive course, he was able to take a few steps for the first time - absolutely incredible to see!

We really appreciate your support, thank you!

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Donation summary

Total
£1,370.00
+ £330.00 Gift Aid
Online
£1,370.00
Offline
£0.00

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