A MUM of a boy suffering from a rare muscle condition has thanked a couple who have embarked on fundraising activities in his name.
Emma Jerred said it was “heartbreaking” to live with the knowledge that her son Sam has Duchenne Muscular Dystrophy (DMD), which affects just one in 3,000 boys.
The condition, which causes muscle tissue degeneration, causes eventual death and is already causing the eight-year-old’s legs and pelvis to deteriorate rapidly.
Hearing about Sam’s plight, Ed and Jo Procter, of The Trundle, Somersham, organised a New Year’s Eve party and split the £1,000 raised equally between The Upside Down Sports Club in St Ives, which Sam attends, and the charity Action Duchenne.
Mr Procter, 39, will also run April’s London Marathon with his work colleague Paul Vine to raise a total of £2,500 for Action Duchenne. They have raised £1,198 so far.
“It is not only Sam who has had to learn to live with this,” said Mr Procter. “DMD puts a huge strain on the whole family. Sam is the reason we are running.”
Ms Jerred, 34, who lives with Sam in Butts Close, Somersham, said: “Five years ago we were told of the news that no parent should hear.
“We had so many hopes and dreams about Sam growing up to be doctor, racing driver or in fact anything that he wanted to be and that changed one dark, sad afternoon.”
Between the ages of eight and 12 Sam will lose the ability to walk, she said. He will then be confined to a wheelchair, when the condition will quickly progress to his shoulders and neck.
“By his early teens his basic motor skills will be gone and he will be almost paralysed,” she added. “Eventually by his late teens and early 20s, Sam’s heart and lungs will begin to struggle and he will eventually become too weak to continue living.
“Living with this knowledge is heartbreaking and we cry every day. Sam of course, takes it all in his stride but has recently started asking questions about why he has Muscular Dystrophy.
“With all this heartbreak there is a small glimmer of hope that the scientists working on treatments and even cures can manage to come up with something that might just help Sam and all the others living with DMD.”
Sam started a clinical trial two years and has weekly blood tests and injections, along with other high-tech tests and operations.
Ms Jerred added: “He really is the bravest boy I know - actually 100 per cent braver than me.
“He cries with his injections and of course I cry seeing him in so much pain. But with the heartbreak-come the highs - over the last month, he has learnt to jump. This is something that at eight-and-a-half is a huge thing to achieve.”
INFORMATION: To sponsor Ed Procter’s London Marathon effort, visit the website www.justgiving.com/ed-and-paul