September 2 2014 Latest news:
Thursday, December 20, 2012
This time last year, instead of getting excited for Christmas, little Blake Barley from Toftwood, Dereham, was undergoing life-changing surgery in America to help him walk unaided.
He was able to do so thanks to tens of thousands of pounds that was raised as the whole community took his story to its heart. Sophie Wyllie reports now on how four-year-old Blake’s life has been transformed since then.
In the words of Debbie Barley: “It will be a normal, crazy Christmas – and we cannot wait.” She is watching her little boy, Blake, dashing around with his best friend Charlie at Toftwood Infant School, where he started in September.
It seems incredible that, just over a year ago, this four-year-old lad who has “surpassed expectations” and can now jump, sit cross-legged and play tag could only get around with a walking frame and wheelchair.
Blake was born 10 weeks premature and developed a form of cerebral palsy after suffering a bleed on his brain. Stiffness in his leg muscles meant he could only walk on tiptoe and needed to wear leg splints to force his heels to the ground.
Debbie and her husband Luke launched the Blake’s Wish to Walk appeal in July last year and originally sought to raise £50,000 for the three-and-a-half-hour selective dorsal rhizotomy (SDR) operation, performed at St Louis Children’s Hospital in the United States on December 20 last year by neurological surgeon Dr TS Park.
The EDP’s sister papers, the Dereham Times and Fakenham and Wells Times, offered to support the appeal through the Let’s Help Blake to Walk campaign – which received staggering support from readers.
The family’s original target was smashed in just 15 weeks, and in the end more than £80,000 was raised.
The Barley household, which also includes Beth, 10, and Bryce, eight, has been extra busy in the run-up to the festive season.
Debbie explained: “We have seven trees up in the house. This year is about making it special. Last year it was a very different Christmas for the family – they are all very excited. As a parent, the operation was the best Christmas present.”
She recalled that, on Christmas Day last year, her son was undergoing a physiotherapy session at the American hospital.
When he was first diagnosed with cerebral palsy, Blake’s parents were warned he would never be able to jump. He first jumped eight months after the operation.
Blake can also walk on uneven surfaces, step on and off a kerb and does not need as much one-to-one support in the classroom. His old frame is kept at school, just in case.
Debbie said: “It is so nice to see him walking around the classroom and not needing the support.
“He has made lots of new friends at school. His confidence has grown massively. Now he can keep up with his friends.”
She added: “I never thought I would hear him say he enjoys playing tag.”
Although Blake does still have some difficulties with his balance, Debbie sometimes forgets just how different his life was before the operation. “He is doing things now that we only dreamt he would do. He doesn’t look any different to any of the other children, which is lovely,” Debbie added.
“Blake is always going to have to work to keep himself strong and fit. SDR is not a cure: it takes away so many of the barriers preventing things he would like to be able to do.
“He has been a trouper.”
The little boy still needs physiotherapy, wears knee immobilisers at night to keep his legs straight, and has small ankle splints. But that operation a year ago has helped him to learn life skills and boost his independence.
Debbie said: “I could still cry now about the support we got: it is incredible. People still recognise him in town. We want as many people to know how they have helped him.
“Every single person who donated time and money has been part of Blake’s future.
“Without that, his life would be very different to how it is today. We’ll always be grateful.”