Family launch bid to get Jack (10) on his feet with campaign to buy walker

THE family of a young boy suffering from a rare illness have vowed to make “every day as precious as possible” as they don’t know how long they have left with him.

Devoted County Londonderry mum Maura McCrystal speaks lovingly of her 10-year-old son — the youngest of five Draperstown brothers and one of only 44 people in the world who suffers from the illness.

Fun-loving Jack lives with a condition called Ryr-1 myopathy.

His illness means his muscles are extremely stiff, which has caused his backbone to curve so much that he has metal rods inserted to help straighten it.

His wrists and feet have contracted, meaning he needs splints to keep them in a stable position, and he also needs physiotherapy to keep his muscles stretched.

Jack’s problems don’t end there, however — he doesn’t talk and can’t eat using his mouth — yet he remains the life and soul of the McCrystal family.

Now his parents want to give him the chance of getting onto his own two feet for the first time.

They have begun a fundraising campaign to buy a special lightweight walker which will help him out of his wheelchair.

“He’s had to put up with so much in his life,” mum Maura (48) said.

“It’s a round-the-clock business for us as a family.

“His condition was only diagnosed in January last year, after nine years of not knowing.

“We knew there would be problems before he was born, the scans weren’t right,” she said.

After Jack was born he spent nine weeks on life support in the neo-natal unit, but now his condition is known, he makes regular visits to Great Ormond Street Hospital in London to have the rods in his back adjusted as he grows.

“There are only a handful of cases in the world so this has been a learning curve for the doctors at Great Ormond Street as well as us,” said Maura.

“But it’s still very difficult to treat as it’s so rare and every patient displays different symp- toms.” The expense of trying to give Jack the best life possible is also mounting up for the McCrystal family.

“It’s not easy,” said Maura. “The trips to London are partially reimbursed, but it’s expensive for us as a family.”

Recently, Jack was introduced to a new lightweight walker to help him get onto his own feet.

“The walker isn’t cheap, but once he tried it out and we saw the look of delight on his face we decided we’d simply have to do whatever we can to try to get one for him,” said Maura.

“At the minute he’s pretty Jack McCrystal and(below)on holiday with mum Maura

❝ Why should a price tag stop a child from getting up on his feet and being able to move around?

much a full-time wheelchair user and he’s a speed demon in it. In fact, he loves anything on wheels, and he’s fascinated by all the London buses when we go over there.

“He loves nothing more than going out with his dad, Ronan, a joiner at Specialist Joinery in Maghera, on bike rides in his special trailer. He loves parks and going to Portstewart and Portrush.

“But we want to give him the chance of getting out of his own wheels,” she said.

“He has a walker at the minute, but it’s very heavy for him to manage. It’s very difficult for him to move around in and we know he’s sore when he’s in it.

“We’d love nothing more than to give him a little extra independence so he can run around on his own two feet after his brothers.

“The NHS have been fantastic since before Jack was born. They’ve stood by us and supported us, and we’ve had wonderful support from family and friends to make Jack’s life as good as we can.

“He goes to Kilronan School in Magherafelt and it’s a wonderful place for him.

“He has learning difficulties as well as his other problems, but he has a great understanding and it would be a dream for us to see him walk in there under his own steam.”

For now, it’s the price tag that’s holding Jack back.

“Why should a price tag stop a little boy from getting up on his feet and being able to move around freely?” said Maura.

That’s why family and friends have already risen to the challenge of getting Jack his lightweight walker. A GoFundMe page has already raised nearly half of the £1,800 the family needs.

“We’d do anything to help Jack out,” said Maura.

To find out more visit the GoFundMe website and search for Maura McCrystal