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Young Jack reveals the struggle of living with brittle bone disease – Evening Telegraph

The smallest of touches, a sudden turn in direction or a tiny slip can be enough for Jack Lewington to hear a tell-tale “snap”.

That’s the reality of living with brittle bone disease.

But 13-year-old Jack refuses to let it get him down, despite having broken his legs more than 10 times among a string of injuries to his bones and muscles over the years.

He said: “Sometimes it causes me a problem but I mostly just try to go on as normal.

“There was a worrying time when I kept breaking my tibia (shinbone). I broke it four times in a row I think. I just kept breaking it in the same place over and over again before it was properly healed. But I’ve also broken both my femurs (thigh bones) two or three times as well. They were the most painful.

Jack at home with his dog Barney

“I think the drugs I am on are making my bones stronger because I’ve only broken two bones so far this year.

“I broke my nose and my elbow — that was quite sore. My bones just break a lot easier, so any contact with other people can be quite risky.

“I can break a bone with the smallest amount of force — just a slip or a sudden turn in direction can be enough.

“Any contact in sports normally leads to a broken bone so I can’t really do much like play football. I find it really hard not being able to join in when everyone else can. It can be tough at school sometimes.”

Mum Patricia Lewington, a business support assistant in Dundee, said Jack was diagnosed shortly after birth, adding: “He fractured his femur when he was born, that’s how we knew there was something wrong.

“At the time, it was very upsetting to be told he had brittle bone disease — but you adapt. Jack adapts well. He has a great attitude to life and just gets on with things. All teenagers are self-aware and this is tough for him, finding where you fit.”

She said Jack, who goes to Perth Academy and lives in Scone, has a moderate form of the condition, which “causes pain and limits certain aspects for him”, adding: “It’s definitely a lot easier now because he knows his limitations better but when he was younger it was difficult.”

Jack in hospital after breaking his legs when he was one.

Jack has also raised money for the Brittle Bone Society, based in Dundee, which he feels is a crucial support to him, and he was very happy to hear the society was granted £63,785 by BBC Children in Need in its first round of funding this year.

“I really look forward to their AGM,” said the teen, who was the society’s young fundraiser of the year last year.

“Just meeting other people there who have the same thing and the same experiences can be really important. I can talk to people my age who are going through this.

“I’m sure the funding will let them do even more to help. It’s quite rare so there isn’t really anyone around here my age group who shares a similar lifestyle.”

Over the next three years, the money will fund a support development officer, who is a key link between families, healthcare staff and children with the condition.

Patricia Osborne, chief executive at the Brittle Bone Society, said: “Thanks to previous support from BBC Children in Need, we have been able to deliver events that bring children and families impacted by brittle bones together to share their experiences and also form a support network.”

Source: Young Jack reveals the struggle of living with brittle bone disease – Evening Telegraph


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