A fundraising appeal has been set up to give a little boy with an incurable brain condition the best quality of life possible in the short time he has left.
Matthew Sagar-Gray was a normal little boy until the age of 18 months. He was running around and had started to put sentences together.
But in August last year his parents Emma and Paul Sagar-Gray started to notice he was stumbling a bit. Emma, 31, who grew up in Shipley, took him to the doctor who referred him to a specialist. After a battery of tests Matthew was diagnosed in April with an extremely rare genetic disorder called spinocerebellar ataxia type 7 (SCA7).
The condition results in the degeneration of the cerebellum, the part of the brain which controls co-ordination, and Matthew, who is two-and-a-half, can no longer walk, sit up, talk or eat and he is rapidly losing his eyesight.
Mrs Sagar-Gray said: “He is going back to being like a baby. His body is effectively shutting down around him. It is quite tough for him. He has maintained his understanding and he knows what is going on around him, but he can’t talk any more.
“There is no cure for it and nothing they can really do. He is under palliative care from the local hospice now. It is a case of watching and waiting, which is the hardest thing.”
Emma and Paul are both serving in the armed forces and are currently stationed in Bedfordshire, but their family and friends in the Bradford district are doing all they can to raise money to buy equipment for Matthew, which is not funded through the NHS.
These include a second-skin suit which enables Matthew to have more control over his body, a special car seat and wheelchair, all of which cost thousands of pounds.
A day of fundraising will take place at Asda, Shipley on Sunday, November 25 from 10am to 4pm organised by Emma’s friend Emma Dean, who works at the store. There will be a raffle, tombola, with many businesses contributing prizes and bag packing in store. Asda has also kindly agreed to match-fund whatever is raised on the day.
“We are really touched by the fundraising and grateful for the efforts being made to enhance Matthew’s life in the short time that he has with us,” added Mrs Sagar-Gray.