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It’s something we have to get through together
EMMA DUNN reports on the mother who embarked on a battle to save her young son’s legs
LIKE most 10-year-old boys, Luca Railton loves nothing more than running around with his friends.
But the Prior Park School pupil, who also enjoys football, tennis, rugby and cricket, is facing the prospect of having his right leg amputated unless his family can raise £135,000 for surgery in America.
Luca was born with no bone in his right knee, no right tibia (the bone below the knee) and only a partial left tibia due to a rare condition called bilateral tibial hemimelia, which affects one in a million people.
He has had more than 60 hours of surgery throughout his life to help get him walking with the aid of leg supports known as callipers.
In February though, the family were told NHS surgeons in Oxford could not do any more for his right leg, and as a result they would either have to fuse it, making it like a golf club, or amputate it.
Luca’s family have now started a fundraising campaign after discovering a surgeon in America, Dr Dror Paley, who has treated more than 200 patients with Luca’s condition, and says he can get Luca walking pain free and without callipers.
They have raised more than £16,100 so far to pay for the surgery, which is scheduled to take place on March 27.
Luca said: “I just want to get better. Sometimes I feel sad when I can’t do stuff my friends can do.
“My friends have always been really supportive and they always help me. I have told them about the operation and they said to go for it.
“When I had an operation last year I had a zimmer frame and they were helping me.”
Luca’s parents Teresa and Alex found out their son had problems with his legs, thought to have been caused by a blood supply issue in the womb, during a 20 week scan.
He was born at the John Radcliffe Hospital in Oxford on August 27, 2003 and his parents were told that although surgeons might be able to save his left leg, he should have his right leg amputated.
It was then that Teresa and Alex, who both lived in Old Town at the time, started the biggest fight of their lives to save Luca’s legs.
Their determination paid off when they discovered Professor Weber, who worked in Germany, and was flown over to England in 2005 and performed 10 hours of surgery on Luca at the John Radcliffe Hospital to put metal frames on his legs.
Since that time, Luca has had more operations to either lengthen or straighten his legs.
The family have been looking for alternatives ever since the appointment in Oxford in February, which Luca was at, in a desperate bid to save Luca’s leg.
Luca, who lives just outside Malmesbury and has grandparents in Old Town and Sparcells, said: “I got a bit scared at the appointment in Oxford. He was being negative and not talking in a positive way. I am really positive.”
Luca had his first appointment with the surgeon at St Mary’s Medical Centre in Florida in October.
The surgery will take place in stages over six months, and will see Luca’s feet being corrected so he no longer walks on the balls of his feet. They will operate on his ankles and left knee, and his right leg will be lengthened and fused in a way that will still allow him to run around. Ultimately, it will mean he can walk pain free without his callipers.
Teresa, 42, who works in Old Town as an IT manager for Zeal Solutions Ltd, said: “Luca just wants his own legs. It has been a battle since he was born but we have come so far and Luca is so determined.
“There is nothing better than having your own legs and once you take them away, it’s final. We are trying to give Luca the best chance of being able to keep his legs and being able to walk freely. Luca never complains, he is so strong.
“The John Radcliffe Hospital have been absolutely brilliant but they have just reached their limitation due to funding or knowledge. The saving grace out of all this is we know there is a chance Luca’s leg can be saved.”
Funds raised will pay for the operation, aftercare, new callipers and medication. To donate visit http://www.funkydoo.co.uk/helplucawalk/ or https://www.face-book.com/lucarailton or phone Adver journalist Emma Dunn on 01793 501797.
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