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Cheshire friends’ vow to climb 22,000ft mountain for schoolboy with Hunter Syndrome

TWO friends will endure the most gruelling challenge of their lives to raise £25,000 for an eight-year-old boy with a rare disease.
Paul Butcher (Ashton Hayes) and Luke Jones (Hargrave) to climb Ama Dablam for GEM Appeal, Image 2

TWO friends will endure the most gruelling challenge of their lives to raise £25,000 for an eight-year-old boy with a rare disease.

Paul Butcher from Ashton Hayes and Luke Jones from Hargrave plan to conquer the 22,000ft Ama Dablam, one of the highest mountains in the Himalayas, to raise vital funds for The GEM Appeal, which funds research and treatment of incurable genetic diseases in children.

They will do it for Luke’s Godson Harry Hudson who, at the age of four, was diagnosed with the rare genetic condition, Hunter Syndrome, meaning he may not live beyond his teens.

The condition affects Harry’s ability to break down sugars in his body, leaving the Mickle Trafford Primary School pupil suffering from impaired physical and mental development.

For the past few years Harry has been receiving groundbreaking treatment from the GEM Appeal-funded Willink Unit at the Royal Manchester Children’s Hospital which carries out research into genetic disorders and provides treatment.

It is because of this treatment that Harry, whose father Paul is headteacher at Duddon St Peter’s Primary School, has been able to grow normally and develop like other eight-year-old boys by playing football, bike-riding and enjoying life to the full.

Luke, 41, and family friend Paul decided to launch the Amaventure project, which will see them working with schools, develop an educational website and take part in a number of events before they depart for the Himalayas in autumn 2014 hoping to raise more than £25,000 for The GEM Appeal.

Paul, 42, a teacher at Aldford Primary School, said: “Luke and I have been climbing together for some time now and have climbed several mountains in the UK and Alps.

“In 2011 we raised £1,300 for the GEM Appeal by climbing the Weisshorn in Switzerland and while this was a serious but enjoyable undertaking, the opportunity to raise money for Hunter Syndrome was the most successful part of our expedition and inspired us to take on greater challenges.

“The Willink Unit provides thousands of children with very specialised care and continues to develop more sophisticated treatment through ongoing research, but it is expensive to fund.

“The money raised for the GEM Appeal through Amaventure, will go to the Willink Unit and really will help children like Harry to live longer.”

Harry’s mum Sharon, 39, a paramedic who also has a six-year-old daughter Libby, said she ‘wells up’ everytime she thinks about Luke and Paul’s feat.

“What they’re doing is just amazing. They’ve done fundraising before but nothing on this scale,” she said.

“You really do realise with things like this, how lovely people are.”

Sharon, whose family lives in Newton, added: “I can’t even talk about it without tearing up! We’re all behind Paul and Luke every step.”

To find out more, and to support Paul and Luke, visit their website www.amaventure.co.uk .

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