He was in a body cast for the first seven years of his life, he can't carry his school bag and he will never play sport. But the Irish health service was in no hurry to help.
Following a high-profile media campaign last year, Devinn Behan finally got the two critical operations he needed to relieve the intense pressure his curving spine was putting on his heart and lungs.
This month he becomes a teenager and returns to regular school hours for the first time since his back was straightened.
His family is grateful for his recovery and indebted to staff at Our Lady's Hospital for Sick Children in Crumlin, Dublin, but Devinn's mother Veronica believes the condition of services for children remains critical.
"I think it will get worse to tell you the truth. I think they only helped the scoliosis children including Devinn because we shouted the loudest," she told the Sunday Tribune.
Devinn, from Naas, Co Kildare, became the focus of national attention when operations to treat his neurofibromatosis were delayed for 16 months.
A shortage of resources continued to put his health in jeopardy. The Behans were prepared to pay hundreds of thousands of euro for private surgery, thanks to the generous offer of financial support from friends, but there were no options available in Ireland.
Finally in September last year, following intensive campaigning, Devinn was operated on by surgeon Jacques Noel who removed bent rods from the schoolboy's spine before straightening and resetting it.
"Devinn loves him like an uncle. Our fight was never with him. It was with the resources," explained Veronica, who remains highly critical and doubtful of the future of Ireland's health service.
She even tackled the outgoing head of the Health Service Executive (HSE) Professor Brendan Drumm at an Oireachtas meeting on Crumlin hospital.
"I went with a friend; we got up at 5am and went there but he wasn't going to see any of us and this was my child he was sitting there talking about," she said.
They approached Drumm's assistant and expressed their disappointment and finally got a half-hour meeting.
"I said I'm not here for all the bull; I want to know when you are going to operate on my child. He knew all the ins and outs of Devinn and he said, 'I will go and see what I can do about opening up the theatre and the ward.' Although Devin got his operations eventually, neither has happened. You can't have faith in these people."
Devinn is now preparing to celebrate becoming a teenager and a new life in better physical condition, despite currently having to wear a body brace.
"He can go bowling because he can push the ball down [with special equipment]. But he can't go on a bouncy castle or play sport and that is a big thing for him," said Veronica.
"He is very talkative and a great mixer. I think Crumlin hospital put that in him over the years. They are part of the family; for Devinn it's a big adventure to go back there. He was always in and out of hospital, it's part of his life."
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