A TEENAGER who defied doctors’ expectations has died after an 11-year battle with an incurable genetic disorder.

Jack Heath’s mum, Elizabeth, said her son ‘died with a smile on his face’ after his condition deteriorated badly in the past five weeks. Jack, 13, died surrounded by his family at his home in Cotman Close, Bacup.

In 2002, when he was diagnosed with MPS II Hunter syndrome, doctors said Jack would be unlikely to make it into double figures.

And two years ago his family were told he had less than a week to live.

Mrs Heath, 40, said he was a ‘fighter’ until the end.

She said: “He died with a smile on his face. He’s with the angels and his friends now.

“I’m just relieved that I don’t have to watch my baby suffer anymore. It leaves a massive empty space in our lives.”

Dad Jason, 44, and Jack’s sister, Katie, eight, were also by his side when he passed away at 1.20am on Wednesday.

Jack was a pupil at Holy Trinity CE Primary School, Stacksteads, and Tor View Community Special School, Haslingden.

Hunter syndrome, which affects roughly one in 150,000 people, left Jack deaf, dumb, incontinent, confined to a wheelchair and in need of 24-hour care.

Mrs Heath said: “It has been horrendous this past five weeks. He just kept fighting and wouldn’t give in, which is typical of him.

“It’s so strange that he’s not in his bedroom anymore. Jason keeps going in to give him a kiss and then realises he’s not there.

“Katie is very upset as well. She was so good at looking after Jack.

“I’ve got literally hundreds of people to contact because he was so popular. People I didn’t know would stop me in the street and ask me how he was.

“People have been so generous over the years. I can’t thank them enough."

Mrs Heath said Jack only spoke about 10 words in his life, the last of which was ‘horse’ in 2006.

His coffin will be carried up to Acre Mill Baptist Church in Hammond Avenue, Stacksteads, by a white horse and carriage before his funeral.

He was also a huge film fan, with Harry Potter among his favourite characters.

Mrs Heath said: “I remember he was so disappointed that by the time the last Harry Potter film came out, he was too unwell to go to the cinema, which he loved doing.

“So we all gathered around the TV at home to watch it on DVD. It was a really special moment.

“I will remember a boy who was loving and caring. He was a real character that touched the hearts of everyone he met.

“Jason and I are better people for having known Jack. He changed us for the better.

“Some of the nurses who cared for him have been in touch already to say how much of a privilege it was to look after someone so courageous.

“It’s going to be very difficult to get used to not having him around, but Katie will help us cope. We have so many great memories.

“Just a couple of weeks ago he was out sunbathing, making the most of his time. We knew it was coming but it hasn’t been any easier.”

Mrs Heath also paid tribute to Professor Ed Wraith, the consultant paediatrician who looked after Jack for much of his illness, who died suddenly on April 10.

Jack’s funeral, which will be conducted by lay preacher David Cragg, will take place from 11am on June 26, followed by burial at Bacup Cemetery.

His family have asked for any donations to be made to The Society for Mucopolysaccharide Diseases (the MPS Society).

  • Leave your tributes to Jack in the comments section below