Care unit for terminally ill child partly funded by St Albans almost finished
- Credit: Archant
A care unit for a terminally ill child funded by the local community is close to being completed in time for his 11th birthday.
St Albans residents rallied together and raised £30,000 in a matter of months for Shay Murray, who has a very rare degenerative disorder called Pearson’s Syndrome.
It is a very serious condition with most sufferers not living to reach the age of five. The oldest person with the disorder died at 14.
Ten-year-old Shay struggles to see, hear or move his muscles, and lacks in spatial awareness. He spends much of his time in Watford General Hospital, Great Ormond Street Hospital, and Keech Hospice in Luton - away from family and friends to support him.
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.
It can be too exhausting for Shay to operate his electric wheelchair and even thinking too hard, for example recalling words to memory, leaves him drained and weak.
His mum and dad, Alan and Sharon, asked for help to convert their Bushey home into a palliative care unit which Shay can use to live out his last days in comfort and surrounded by those who love him.
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The conversion cost about £60,000, but half of that was subsidised by a disability grant from Herts county council. Even once funding was secure, the family was worried Shay would pass away before the building was finished. However, he has surpassed expectations yet again and is looking forward to using and enjoying the brand new space.
Dad Alan, who is a coach at St Albans’ St Colmcilles Gaelic Football club, said: “He is not going as quickly as we thought he would. He hasn’t dropped off that badly and so he will be able to benefit from the room, as we were worried that by the time it was built he wouldn’t benefit from it.
“But he will be able to play in it and enjoy the room before things get bad.”
The unit is fitted with everything Shay needs and more because funding was available early - and Alan thanked everyone who donated.
“He is happy. I try to keep things simple and so long as he is smiling, he is doing okay with me.”
Shay will celebrate his 11th birthday at the end of March, just as the unit is completely done.