An eight-year-old boy is on a mission to raise funds to help pay for a baby boy to be sent to America for potentially life-saving treatment.
Charles Robson, of Ashwicken, is hoping to smash his £1,000 target with his four-mile sponsored run next month.
“I am so proud of him, he’s a keen runner, always does his daily mile for school and he wanted to do something to help,” said his mum, Emily Self.
Charles, who attends Holly Meadows School at Pott Row, came up with the idea of a sponsored run after he heard about Edward, son of a family friend, who was diagnosed with spinal muscular atrophy (SMA) type one, at just seven weeks old.
The youngster’s condition is a rare, genetic neuromuscular disorder which is progressive and life-limiting.
Although there are some treatments to help manage the symptoms, currently, there is no cure for SMA in the UK.
But Edward’s parents, Megan Willis and John Hall who live with their baby son in Clacton, Essex, are desperately trying to raise £1.2m to take him to America to be treated with Zolgensma.
It is gene therapy medicine, a one-time injection which alters the underlying genetic cause of SMA, which may permanently stop the disease.
Miss Self, a community nurse at Swaffham, said: “As a parent, I can’t imagine what Megan and John are going through.”
Charles has been training for his run which is set to take place at Lynnsport, King’s Lynn, on Saturday, March 13.
So far, Charles has raised almost £650 via his online fundraising page.
Miss Self said: “He’s really excited to do his run and I can’t believe the amount of support he has had so far, we are really grateful.”
To sponsor Charles, visit https://www.justgiving.com/crowdfunding/charlesjames
To read more about baby Edward, visit https://uk.gofundme.com/f/9vexs3-help-for-edward