Campaign to help 10-year-old with rare syndrome starts in St Albans
- Credit: Archant
A well-known St Albans youth football coach has made a heartfelt plea to ensure his dying 10-year-old son’s last days can be spent in the comfort of his own home.
Gaelic football coach Alan Murray’s son, Shay, has Pearson Syndrome - a mitochondrial disease which only about 100 children have ever been diagnosed with.
The oldest child with Shay’s strain of the disease only lived to 14 years old.
Babies with the illness rarely live past five years old and Shay, who celebrated his 10th birthday yesterday, is suffering the debilitating effects.
Since the diagnosis in 2009, Shay’s mum says it is is slowly “taking away everything he has”, including his sight, hearing, spacial awareness, and muscle control.
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As the disease impacts on the body’s energy function, it is too tiring for him to even lift a fork to eat and he is now 100 per cent tube-fed.
He is so exhausted it can be too much to operate his electric wheelchair and even thinking too hard, for example recalling words to memory, leaves Shay drained and weak.
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At the moment Shay spends a lot of time at Watford General Hospital, at Great Ormond Street Hospital, and every weekend at Keech Hospice in Luton.
Any emergency in his condition could result in his sudden and abrupt death, with little warning.
It would mean everything to the family if they could turn the downstairs of their home, which is near Bushy, into a palliative care unit for Shay.
This would enable him to spend more time with his loved ones throughout the next weeks, months, and years - but because of the nature of Shay’s condition the work must start as soon as possible.
The conversion would cost about £60,000, and even with half of that total subsidised with a disability grant from Herts county council, the £30,000 target is still a crippling amount for the Murray family.
Sharon said throughout everything, her son is always smiling: “He’s a remarkable boy and he’s tough in a lot of ways, but it’s taking away everything he has, it will slowly take everything away.”
She said she didn’t want to spend the time left with her son Googling cures and being sad, and she remains proud of everything he does: “For me it’s so important for a child, even for a child limited, to have a childhood, and that’s why the palliative care unit is so important, because he needs his independence as long as possible.
“It’s hard but we wouldn’t change him in any other way.”
Alan and Sharon find it difficult to leave the house for fear of what may happen while they are gone, and knowing they could not put that incredible responsibility on a babysitter.
A care unit in the house would help them all to have a better quality of life - both Shay and his family.
Sharon found support, and a lifelong friend, through a Facebook group dedicated to parents of children with the syndrome - she lives in New York and her daughter recently passed away from the disease.
Shay’s two sisters have learnt acceptance and resilience from their brother - one of whom plays Gaelic football at her dad’s club, St Colmcilles.
Alan was instrumental in setting up the under 14s girls team at the club, which Shay’s sister plays in, and this St Albans team went on to win the national championships in the sport last year.
The campaign has the full backing of Oaklands College in St Albans, as director of student experience Sean Scully has known Alan through the club for the last three years.
Sean, who was recently touched to finally meet Shay, said: “He’s a lovely boy, and that’s the bit that caught me, he’s the most down to earth boy, really positive boy - especially when you take everything into consideration.
“He just wants to be at home with mum and dad at this time.”
Sean has a son the same age and says he can completely empathise with Alan, who is desperate for Shay not to be upset and alone in hospital.
He added: “Geographical boundaries don’t matter, if Shay came from anywhere, we would try to help.”
Oaklands will be hosting a family fundraising day in aid of Shay’s cause on May 21 from 11am to 4pm at the St Albans campus, with stalls, inflatables, face painting and other entertainment.
Activity contributions are welcome, email Sue.McKinnon@oaklands.ac.uk
To donate to Shay’s campaign, click here.