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Eight-hour operation to straighten spine gives 13-year-old his life back

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THIS 13-year-old boy is a "different child" after undergoing an eight-hour operation to straighten his spine with two metal rods.

Harvey Legg, of Holton-le-Clay, had the lengthy surgery after scoliosis – a spinal curve caused by a rare genetic condition called 22q 11.2 – reached a 90 degree angle and was crushing his organs.

Doctors only usually perform the surgery on older children aged 15 or 16, but Harvey's condition was so severe he needed it four years early.

The youngster, who was in serious pain prior to the procedure at The Children's Hospital in Sheffield, learned to walk again afterwards and now plays with his friends like any other child.

Harvey's mum Claire, 39, said: "By the time Harvey was set to go for his operation, he was excited to have it done.

"The surgeon said he'd never met anyone excited about it but his standard of life was so poor it was going to be so much better for him and that was what he was looking forward to.

"It was the longest day of my life when he went for the surgery but now he is a different child, his spine healed marvellously."

Dr Ashley Cole put two titanium rods into Harvey's back either side of his spine which will remain for life and prevent his spine from curving with the scoliosis. He is unlikely to need any more surgery.

Dr Cole, a consultant spinal surgeon at Sheffield Children's NHS Foundation Trust, who worked for eight hours during Harvey's mammoth operation, said: "The op was a huge success and Harvey has recovered fantastically well.

"We had to do the surgery much sooner with Harvey than many other children because his condition was progressing at such a fast rate and it was making him very uncomfortable.

"We only perform this surgery in severe cases but it really changes the lives of these children."

Claire last year discovered Harvey's problems were caused by the rare genetic condition 22Q 11.2 Deletion Syndrome which affects just one in 4,000 people in the UK and he could pass it onto his children.

It only became clear he could have a genetic condition two years ago when it was indicated by the various changes in his health.

Midwives had spotted problems with Harvey's kidneys before he was born and he grew up with learning difficulties. The scoliosis was then discovered.

Many children with the syndrome also have a serious heart defect and a particular facial appearance which Harvey does not.

His condition is so rare and the symptoms so general that clinicians needed to test for many different rare conditions to find the exact one.

Claire was approached by a genetic counsellor and offered the series of tests to find a diagnosis and the test for 22q11.2 was positive.

She said: "We had lots of tests to diagnose Harvey with his condition.

"It was a bigger shock than hearing about the scoliosis because it's often passed on by parents but Harvey's dad and I were tested and neither of us have it. However, there's a 50 per cent chance Harvey could pass it onto his children and the counsellor would want to see him again when he thinks about having a family."

Harvey, who also lives with step-dad Steve Walker, 46, recently took up drama class.

Claire added: "He's much better now. He didn't have great confidence when he found out about his condition but going to this group he's improved massively and it's given him so much confidence. Since the operation success he's really turned into a confident young man."

Eight-hour operation to straighten spine gives 13-year-old his life back


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