Rupert, our five year old son has an incredibly rare degenerative neuro-metabolic condition called NGLY1 deficiency. There are only around 100 known cases worldwide.

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.

We really appreciate your support, thank you!

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