THE parents of a boy suffering from an incurable disease are appealing for funds to help build him a palliative care bedroom so he can spent less time in hospital.
Ten-year-old Shay Murray from St Albans suffers from a rare mitochondrial disease known as Pearson’s Syndrome, which sadly has no known cure.
The disease has slowly eaten away at Shay’s senses – he struggles to see, hear, move his muscles and be spatially aware.
The condition is chronically progressive meaning that it worsens over time.
Less than 100 cases of Pearson’s Syndrome have been recorded worldwide, meaning Shay needs specialist care.
Shay has a manual and electric wheelchair to help him get around but is 100 percent tube fed and needs help with everyday tasks.
Despite his condition, the 10-year-old lives life to the full and is a keen Watford FC fan.
Currently, Shay shares a room with his parents so they can give him constant care and attention, but as any parent will know well, every child dreams of their own bedroom.
Shay has received a grant from St Albans City & District Council but it is not enough to build the palliative care room he needs.
His family are appealing for help make Shay’s dream of having his own bedroom come true.
“Considering Shay’s situation he is one of the happiest children you will ever meet,” Shay’s dad Alan Murray told The Irish Post.
“No one who has met Shay can say they’ve never seen him laughing and smiling. He is so cheeky and witty for a 10-year-old.
“He is absolutely buzzing that he will be getting his own bedroom and he is quite literally counting down the days, we just need that extra push.”
Last week, a fundraiser at Oaklands College in St Albans raised over £12,000 for Shay – pushing the total raised further towards the £30,000 he needs for his own bedroom.
The room will include a number of machines and medical appliances needed to help treat Shay at home and him out of hospital and with his family whenever possible.
“It will basically be a hospital room in our own house but much more personalised and suited to Shay’s personality,” explained Mr Murray.
“As far as I know only five children with Pearson’s Syndrome have lived past five-years-old, and having our own specialist room at home will help us spend the time we have left with Shay in a loving environment.
“We know time is short and we just want to make it as happy as possible for the little guy.”
