Steelers go extra mile for Belfast Giants fan Blake in wheelchair fundraiser
Fundraisers from a rival team are to walk nearly 100 miles to help purchase a special wheelchair for a young Belfast Giants fan with a uniquely rare genetic disorder.
Blake McCaughey (10) was born with parts missing from two different chromosomes, causing muscle weakness so severe that a small drink of water could drown him.
The youngster, from Tandragee in Co Armagh, has also undergone heart surgery, and is awaiting an operation on both hips.
A devoted ice hockey fan, Blake is a regular at Giants matches and has become a mini celebrity at the SSE Arena.
Now support staff from the Sheffield Steelers are to undertake the fundraiser to buy the customised chair to improve his quality of life.
"We believe that Blake is the only person in the world with this condition," his mum Christine explained.
"When he was born the genetic team didn't know what he had.
"The consultant said that if you wanted to read about Blake, you could take a book about paediatric medicine, read it back to front and upside down, and you are close.
"Since the age of 16 months he hasn't been able to eat or drink, as his swallow is so weak.
"He had 19 cases of pneumonia and hospital admissions in the first two years of his life, because when he was eating or drinking he was spraying food into his lungs.
"His swallow is so weak that he could have drowned himself by bathing, swimming or playing in water."
Blake doesn't have the strength to cough to clear his throat. And although his condition is not life-limiting, it is life-threatening.
"Developmentally, he is about six or seven years old, and he goes to Ceara Special School in Lurgan," Christine added.
"He had surgery in May where they had to stop his heart and break his rib cage to get an aortic valve donation in, as his had never formed properly.
"He is also due to undergo double hip surgery, as both of his hips are 40% out of their sockets, and if they are left they would both dislocate completely."
Despite his health troubles, Blake is a "real character with the biggest heart", said Christine, filling her life - and that of his dad Andrew and sister Pixie (7) - with love.
His current wheelchair, however, "doesn't do everything that he needs", his mum explained, and the family hope to get a new state-of-the art one.
"The chair we have doesn't tip back, so he can't recline and rest his head when we are out for the day," she said.
"The new chair will have back support, a head rest and tie downs, so he can travel safely on school trips. It would really improve his quality of life."
On Tuesday four members of the Steelers support team will begin the four-day, 92-mile journey.
Fundraisers Neil Edwards, Dean Woolley, Dave Simms and Elliott Hall will walk from the South Yorkshire city to Birkenhead in Merseyside, where they will take a ferry to Belfast and walk the final leg from the port to the SSE Arena.
The Belfast Giants host the Sheffield Steelers in the Elite League on the Saturday.
The team have already raised nearly £11,000 of their £18,000 target - half of which will go to Blake's wheelchair fund and half to the Amy Usher Fund at Weston Park Hospital in Sheffield.
- To donate, visit the 'Simmsey and friends again' page on gofundme.com