THE mother of a boy with an extremely rare auto-immune disease has spoken of how her family felt “normal” again after her son’s ultimate wish to go to Lapland was granted.
Harry Cooper, of Goring Road, Goring, has juvenile dermatomyositis (JDM), a disease which makes his immune system attack blood vessels throughout the body, causing inflammation called vasculitis. Harry’s condition is so rare, it affects only three in one million children.
Children’s wish-granting charity Starlight helped the nine-year-old make his dream of meeting Father Christmas in Lapland become a reality, along with Arundel and Barnham Lions Club, which raised £2,000.
The three-day trip in December included riding snowmobiles, meeting reindeer and making Christmas requests to Father Christmas.
Harry’s mum, Claire, 38, said: “This experience has enabled Harry to forget about his illness and be a normal nine-year-old boy. It was very special for us as it gave us time to spend together as a family and have fun without having to think about medication and physio.”
Harry, who attends West Park Middle School, in Worthing, was diagnosed with JDM in July, 2008, after his family noticed he was finding daily tasks, like walking up the stairs, more difficult, and was often breaking out in rashes.
To help him deal with the condition, Harry must take medication and receive physiotherapy every day, as well as having a course of chemotherapy once a week.
But Claire said despite his condition, Harry is a happy little boy and, sometimes, people may not even know he was ill.
“It can be very difficult because no-one knows about JDM, and perhaps they don’t realise how hard it is,” she added.
“I think it’s important to raise awareness about JDM because it is so rare – Harry was only diagnosed when a Great Ormond Street Hospital specialist came across us having tests at Worthing Hospital.”
JDM sufferers can go in and out of remission periods – and, occasionally, the condition never comes back.
Claire said her and her family are keeping their fingers crossed for that moment.
“It would be wonderful if Harry went into remission,” she said. “Especially for Harry’s six-year-old brother, Jack. He’s only ever known Harry as poorly, and he would love for them to play together without Harry finding it too painful.
“We’ll get there, hopefully. We just take it one day at a time.”