St Albans people unite to help 10-year-old with terminal syndrome
- Credit: Archant
Generous aid from St Albans people has touched a campaigning family after their heartfelt plea to help their dying son was featured in the Herts Advertiser.
Readers have come forward to help Shay Murray - a 10-year-old boy diagnosed with the incredibly rare and life-threatening Pearson’s Syndrome.
Few children with the disease live past four years old, and the longest anyone has ever survived with the disease is 14.
The mitochondrial illness means Shay cannot produce energy, and is drained and weak from doing simple things like lifting a fork or just operating his electric wheelchair.
It slowly takes away everything - sight, hearing, muscle control, and even makes thinking exhausting.
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Since any emergency could have sudden fatal consequences, Shay has to spend a lot of time at Watford General Hospital, Great Ormond Street Hospital, and Keech Hospice in Luton.
The family has started a campaign to raise £30,000 and turn the downstairs of their home into a palliative care unit, so Shay can spend the last of his childhood surrounded by family.
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Shay’s dad, Alan, was worried he would spend his last days upset and alone in hospital.
But it needs to be built fast - if it can be finished before Shay’s eyesight is completely gone, then he will be able to manoeuvre around the new rooms much easier, having seen it first and felt his way around.
Otherwise Shay will be literally feeling his way around in the dark.
At the moment, Shay only has daytime vision and has to get a new glasses prescription every six months because they are deteriorating so fast.
Money is needed on top of a £30,000 disability grant from Herts county council (HCC) - the whole build has been estimated as £60,000, and HCC are currently tendering to find a contractor to complete the work.
Support has flooded in since Shay’s story was featured in this newspaper last month, and when family friend Michelle Gallagher called in at numerous St Albans businesses, many have said they will help.
On top of this, residents and friends have been donating to the cause - £270 since April 1 on the fundraising page.
Shay has also been approached by BBC London news, who will filming with him today (April 13), raising the campaign’s profile even further.
Alan Murray, Shay’s dad and a St Albans Gaelic football coach at St Colmcilles, said the family were overwhelmed and taken aback: “It has made an impact, without a shadow of a doubt.
“I am surprised at how it’s come on, it’s amazing and I honestly never thought we would be where we are now.
“It’s quite touching how generous everyone has been - I am not emotional, but it got me, there is a lot of really nice people out there and you don’t often see people like that - it’s comforting.”
He now has hope the £30,000 target can be reached in time.
Hand-signed letters from Shay have been sent out to thank everyone who has supported the cause and the family have addresses for.
Shay’s parents strongly believe that Shay should have a childhood even if he is disabled, and will not stop him going outside and having fun - Alan described him as “always smiling”.
His mum, Sharon, said: “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.”
Oaklands College are supporting the campaign, and will be holding a fundraising day 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, click here.