Community campaign for 10-year-old Shay to be able to live at home, not in hospital
By Fiona O’Brien
A crowdfundraising campaign has been started to raise money to build a palliative care unit in the home of a Bushy boy who is suffering from a rare disease.
The son of Alan Murray, a well known gaelic football coach, and his wife Sharon, Shay was diagnosed with Pearson Syndrome in 2009. There have only ever been 100 reported cases worldwide and the eldest child to be diagnosed with Shay’s strain of the syndrome only lived until the age of 14. Pearson’s Syndrome is an extremely rare mitochondrial disease with no cure.
Shay’s father Alan, who played for St Brendan’s GAA club in London along with his brothers and father, says that the suite planned for the downstairs of their home would mean everything to the family.
“It would give Shay more independence and confidence on his own without constantly relying on everyone else.
“Even though we have spent his life micro-managing every aspect of his life, as even a common cold could kill him, we have always wanted him to be a kid and enjoy his childhood, and not wrap him up in cotton wool,” he says.
The conversion is estimated to cost about £60,000, half of which will be subsidised with a disability grant from Hertfordshire county council.
“Our mitochondrial cells are like power stations in our bodies, supplying the energy every cell needs to function,” reads the crowdfunding page.
“These cells make up our organs and tissues within our bodies. Shay’s cells do not have the energy to make his body organs work properly for example, if a car does not have enough battery power, the car will not start or suddenly stop, no matter how new that car is.
“Shay is nearly 10 years old and this disease is progressing with devastating effects on his health. His one love is his Xbox and he is now having trouble holding on to things along with vision loss, hearing loss and overall muscular weakness.
“This is heart breaking to see and we want him to have the comfort and quality of life before it is too late.”
And now the family want to ensure that he can be cared for in the comfort of his own home rather than moving between home and the wards.
“He will still need his hospital visits, but if we have this suite it will mean he will be discharged sooner because the facilities are in place, and he can spend more time at home.”
“We are raising funds towards a palliative care suite fully equipped to make Shay more comfortable, safe and have the independence he needs in his everyday life.
“Every single penny helps towards our goal for Shay and we would like to thank all of our supporters who have previously donated, thank you.”
The family have set a £24,000 target on their online crowdfunding campaign, which has nearly reached £2,000 at present, and other fundraising events are planned. Alan says that the family would be over the moon if they could get the suite ready while Shay is still in relatively moderate health. At the moment he is sleeping in our room with my wife, but it is very cramped in there.
“He has had relatively good health for the past year or so but it is deteriorating. We know his time is limited.
“By the time the grant comes through and I’ve applied for various loans for this suite it might be too late for Shay to familiarise himself with it. It would mean the world if he could get settled in there and know his way around it before his eyesight and hearing goes.”
Shay’s family are well-known in local sporting circles. When Alan made the move out to Hertfordshire he joined St Alban’s based St Colmcilles, and has since set up the under 14s girls team where Shay’s eldest sister Chrissy plays.
“We set it up 10 weeks before the All-Britain competitions last year, and we ended up winning. Shay has two sisters, Chrissy and Cearney, and we want to make their lives as normal as possible too.
“Chrissy is really into her Irish dancing, with the Murchu Duiginn school, and came 27th in the World Championships in Dublin over the Easter weekend, while Cearney is really into her gymnastics.
“We don’t want to upset that balance of them enjoying their childhood too and having a normal life, and obviously the suite would make things more settled for the whole family.
“Shay is so into football and it was heartbreaking recently to see him miss out on football trials because his health isn’t up to it anymore. He needs two days recovery in bed after playing so was distraught when he had to give it up.
“But he truly is an inspiration. Anyone you ask will tell you that he is the happiest child and always smiling. He doesn’t let him get him down, and you don’t see him grumpy.
“It makes you think when you are complaining about a bad day yourself. He just cracks on with it.
“But we know that Shay won’t make his mid-teens. We were told he wouldn’t live past five, so every day with him is an amazing day and more than we expected. The way we have managed things up until now has given us that extension of life and hopefully the suite will extend it further.”
St Brendan’s GAA club and London GAA have both shared the public appeal online to fundraise for the palliative care unit.
Shay was also interviewed on local BBC news last week. Since Shay’s plight was made public St Alban’s institution Oaklands College have also given the family full backing, as director of student experience Sean Scully knows Alan through St Colmcille’s, as he helped to manage the U14 team.
The college 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.
There is also a planned youth GAA tournament and over 40s so that the whole family can get involved.
More information will be made public at a further date.
• To help contribute to Shay’s campaign, visit www.justgiving.com/crowdfunding/BuildforShay