Race for Rupert

Rupert, our four year old son, has an incredibly rare congenital condition called NGLY1 deficiency. There are only 2 people in the UK with this diagnosis and not much is known about it other than that his lifespan is likely to be limited. 

Rupert’s condition means that he has not yet learnt to speak, stand or 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. Despite 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 and we are now fundraising with the support of family and friends to pay for the course and our accommodation costs so that Rupert can access these life-changing therapies (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’re 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!