St Albans support helps terminally ill 10-year-old reach fund raising target
PUBLISHED: 10:26 25 May 2017
The parents of a terminally ill child who wants to die at home have been overwhelmed after hitting their £30,000 fundraising target in a matter of months thanks to support from the St Albans community.
Ten year old Shay Murray has a very rare disorder which has been slowly eating away at his senses - he struggles to see, hear, move his muscles and be spatially aware.
His energy levels are so low that picking up a fork to eat and operating his electric wheelchair can exhaust him.
Most children with Shay’s illness, Pearson’s Syndrome, do not live past four years old and the oldest person with the problem died at 14.
Shay has had to spend increasing amounts of time in Watford General Hospital, Great Ormond Street Hospital, and Keech Hospice in Luton - away from family and friends to support him.
With the support of the Herts Ad, the Murray family launched the Build for Shay campaign at the beginning of the year in order to turn their Bushey home into a palliative care unit so Shay could spend his last days around those who love him.
The St Albans community rallied around the cause, with a family fun day at Oaklands College and other fundraising events smashing the £30K target, meaning work on the unit can hopefully begin soon.
Shay’s dad Alan, a coach at St Albans’ St Colmcilles Gaelic Football club, said: “I can only thank everyone so much, to say I’m overwhelmed is an understatement.
“I honestly didn’t think we could get £5,000, without all the help we wouldn’t have got anywhere near it, but it got flying. It’s huge for Shay, he is over the moon.
“I thought he understood what the money meant, but when we told him he said ‘what, I will be able to actually drive my wheelchair anywhere through the house?’
He said he was shocked by the level of unprecedented support from kind people who had no connection with the family.
“It’s tremendous, something you would never believe - our little man is completely in awe.
“Every time I talk about it I have to man-up and stop tearing up, it’s absolutely awesome.”
The whole build will cost about £60,000 and the Murrays are awaiting a decision on whether Herts county council will supply a further £30,000 disability grant towards the project.
If all goes well, construction will start immediately and Alan hopes to see the build finished by this year - and with Shay’s condition this is not a minute too soon.
He thanked the Herts Adveritser, Oaklands College, and fellow coaches Neil and Michelle Gallagher for helping him fundraise.
Adding: “All they have done and how they have helped is absolutely amazing. Everyone has put in so much of their own time and it’s brilliant, I never thought we would get here.”
The family fun day at Oaklands raised £12,000 towards the goal.
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