BEING born with a rare condition that affects one in a million people has meant that unless a ten-year-old has surgery on his right leg he faces the prospect of having it amputated.
Luca Railton, a pupil at Prior Park Preparatory School in Cricklade, was born with a rare condition called bilateral tibial hemimelia, meaning he has no bone in his right knee, no right tibia (bone below the knee) and only part of his left tibia.
Luca, who lives near Malmesbury, has had over 60 hours of surgery so far in the UK and Germany in order to help him walk with the help of callipers.
Last year, NHS doctors said they can do no more and his leg will need to be severed or fused as it will become too painful become painful when he gets older.
But pioneering corrective surgery available in America has offered Luca a lifeline as it could mean such drastic surgery on his leg is not needed and allow him to walk pain free without assistance.
Luca is expected to start the first of three procedures at St Mary’s Medical Institute in Florida on March 27, but his family still badly need funds to pay for the surgery after raising only £55,000 of the required £135,00 raised so far.
Luca’s mother, Teresa Railton, said: “There is no time left – as long as we leave it the worse his right leg is going to get.”
“This is not the last operation it is the first. It is going to be something that is ongoing but this is going to be a major operation for him.
“We will probably have to go for yearly visits until he stops growing and there may be more operations.”
Luca’s operation will take place in St Mary’s Institute in Florida, one of only two hospitals in the world where the procedure is available. It will be carried out by Dr Dror Paley, who has previously conducted the same surgery on more than 200 patients.
Despite his affliction, Luca remains fit and active and regularly plays sports such as tennis with his friends.
“Everybody that knows Luca will tell you that he is a determined kid and nothing stops him,” said Teresa, 42.
“He loves to play sport but the consequence is that he is in pain. But by the end of sport, he is exhausted and for him it is like doing about four or five hours where as for a normal child it is like doing one hour.”
On the Saturday, March 1, a horse racing night will be held at Swindon Railway Museum, Swindon, in order to raise money for Lewis.
If you would like to donate to the fund for Luca then visit www.helplucawalk.com
Are you planning any fundraising events for Luca? If so let the Standard know by emailing firstname.lastname@example.org or calling 01285 627319.