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"Is my blood teal?"

It may sound like a surprising question for a doctor to hear - but this isn't just any patient. This is Blake McCaughey, a Belfast Giants superfan.

The 12-year-old, from Tandragee in County Armagh, has a rare genetic disorder that means he will spend the foreseeable future in hospital, hooked up to pumps, for up to 20 hours a day.

But ice hockey has become "the reason he fights so hard through all these challenges".

He spends hours every day watching the sport from his hospital bed, which has been brightened up with teal pillows, in support of his beloved team.

When player Spiro Goulakos broke his ice hockey stick, it was used to make Blake a new pair of crutches.

"For Blake, life is hockey - everything that drives him through rough times will be about hockey and the Giants," his mum, Christine, told BBC News NI.

Blake was born with two chromosome deletions and abnormal muscle fibres.

By the time he was 16 months old, he had had 33 hospital admissions and battled pneumonia 19 times. Since then, he has been designated "nil by mouth".

In May 2017, he had open-heart surgery.

"When he was coming round from surgery, one of the Belfast Giants was there, holding his hand," said Christine.

Blake recovered well but, two years later, his health declined: His gut and bowel stopped absorbing nutrients and his heart rate, blood pressure and body temperature dangerously lowered.

Just last week he had more surgery to help with feeding and he will remain in hospital until he has gained weight.

"When Blake has a bad day, a simple photo or video call from one of his hockey buddies helps him keep fighting," said Christine.

"The Giants have always been a rock to Blake and us, and Blake has no bones in saying that Belfast Giants head coach Adam Keefe is his best mate, although he doesn't like Adam getting cross on game nights on the bench."

When Blake is well enough to leave the hospital, watching ice hockey is always at the top of his to-do list. It's even better when he gets to go with his little sister Pixie.

"He hates to miss a game," said Christine.

"Unlike most 12 year olds, Blake will never get to experience playing hockey but, with friends like the Belfast Giants, they make the impossible very possible and on a few occasions have had Blake out of his wheelchair, pull on the skates and be held whilst he skates in the SSE Arena."

His love for ice hockey has even caught the attention of other teams in the Elite Ice Hockey League (EIHL), the UK's premier competition, who send him videos and messages of love and support.

"Social media has brought us many friends on our journey from far and wide, and especially the hockey community," said Christine.

"Every team in the EIHL has looked after Blake so well and he's got good friends on every team. They have all reached out when Blake has needed a little encouragement along the way.

"Players for the Giants come and go, depending on their contracts, but some of our closest friends have been found through the Giants and no matter where they are in the world, they still keep very much in touch," she added.

"We use social media to spread awareness of Blake's condition and to share his amazing attitude to life, the strength and courage he has pulls us all through. His personality is one of a kind.

"When you meet him for the first time, you will see a shy little boy in a wheelchair but he's an absolute character and fond of the girls, especially nurses and doctors!

"He is a mischievous, fun-loving, hockey-crazed boy who spends hours watching hockey, talking hockey and even sleeps in hockey bedding.

"Blake loves everything teal and they are the reason he fights so hard through all these challenges."

Go here to read the rest:
Ice hockey: Belfast Giants give boy with genetic disorder 'reason to fight' - BBC News

This entry was posted on January 26, 2020 at 4:44 am and is filed under Genetics. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |