Blake’s Giant boost amid battles with rare disorder

A little boy who is wheelchair-bound and cannot eat or drink because of a rare genetic disorder has shown UTV Life what gives him a boost, taking reporter Rita FitzGerald to watch his favourite team.

Blake McCaughey, who is aged eight and from Tandragee in Co Armagh, certainly has plenty of challenges to face.

His parents, Christine and Andrew, realised something was wrong when he was just about four months old.

What were initially thought to be persistent chest infections plaguing the little boy turned out to be cases of pneumonia – caused by Blake aspirating food into his lungs when feeding.

His condition meant he soon had to rely on tube feeding and his family now realise he will probably never eat or drink in the way most people take for granted as it could prove fatal.

Blake during a visit to the hospital. Credit: Family photo

But Blake’s problems don’t end there.

He is also facing heart surgery to replace a valve, probably in the next six months or so, and he will need surgery on his hips which are nearly 40% out of their sockets.

His mum and dad believe Blake may be the only person in the world with his particular combination of conditions.

Despite the daily challenges they face, the McCaughey family are keen to stress the positives and to show that their little boy – along with five-year-old sister Pixie - can still find joy in the things he loves.

And Blake LOVES the Belfast Giants.

With his blonde hair spiked in a mohawk inspired by player Matt Nickerson and with his wheelchair covered in pictures of the team, he is a familiar figure to many of the ice hockey team’s fans.

And he’s also pretty tight with his heroes too, getting fist bumps when they see him in the stands as they hit the ice or head back to the lockers.

UTV’s Rita, on the other hand, has to confess she has never been to a Giants game …

As she finds out about Blake’s battles from his mum, who better to teach her the chants and introduce her to the likes of captain Adam Keefe than one of the team’s biggest fans?

Blake introduces Rita to his Giant buddies. Credit: UTV

  • WATCH: Blake and Pixie take UTV Life's Rita on a GIANT adventure