Family fundraising for 7-year-old’s surgery in US

Eight-year-old Jay Johnson. Picture Ian Rutherford
Eight-year-old Jay Johnson. Picture Ian Rutherford
Have your say

A SEVEN-year-old who defied doctors when he learned to walk again needs further surgery to stop him becoming wheelchair-bound once more.

Jay Johnson, who has cerebral palsy, needs an operation to lengthen his heel chords after a growth spurt threatened to undermine his remarkable progress.

The Lawfield Primary pupil, who celebrates his eighth birthday next week, astonished family and friends when he took his first steps following pioneering treatment in the US three years ago.

He has even been enjoying a kickabout once-a-month following the operation, known as a selective dorsal rhizotomy, to treat spasticity in his legs in 2011. But his new-found freedom is under threat unless his family can raise the £15,000 needed to send him back to St Louis Children’s Hospital next April – or face years deteriorating on a waiting list in the UK.

Mum Sandra, 28, from Mayfield, said she was devastated to learn he needed more treatment, whereas bubbly Jay just took it in his stride.

She said: “He’s been doing brilliantly and walking really well. But every time he grows his muscles get tighter and it’s his heels chords that are posing the problems, his feet have started to turn out the wrong way. He’s finding it hard to stand flat on the ground.

“We didn’t think he would have to go back, but then I noticed that when he was standing up, he wasn’t balancing very well. He was having to keep holding on to things. I sent videos over to the doctor in America and he looked at it, right away he said Jay would really benefit from invasive heel chord lengthening.

“I was heartbroken, I’d hoped the first operation would be it, but you just have to get on with it and do what you can do. Jay’s fine and just happy he’s still on his feet and using crutches. He just gets on with things and has always got a smile on his face.”

So far, they have raised £7500, half the total needed to fund the treatment, physiotherapy, flights and other expenses for the two-week trip to Missouri with dad Paul and little brother Rory, five.

Friends have been taking part in events such as Tough Mudder and a boxing night and a Hallowe’en night is being organised this month.

Sandra, who works as a cleaner at Edinburgh Royal Infirmary, said the support had been “incredible.”

She said: “So many people have been involved in fundraising both this time and before, we can’t thank them enough. We really hope that this will be it for him now. It’s hard doing all the fundraising and obviously hard on Jay too.”

Doctors thought Jay, who was born eight weeks premature, would be confined to a wheelchair all his life.

Fundraiser Karen Alderton, 28, of Bonnyrigg, who ran the Edinburgh half-marathon, said he was an “inspiration”.

“He’s one of the smiliest boys you will ever see in your life so it’s impossible not to love him to bits. Jay’s so brave with all he’s been through and he tries so hard. It’s a shame he has to have another operation, but he’ll come through it.”