In March last year, Teresa and Alex Railton flew 4,000 miles to Florida determined to save their 11-year-old son Luca from certain amputation. A year on, after four lengthy and taxing operations, Luca has defied British surgeons’ bleak prognosis by taking his first steps unaided and without callipers for the very first time.

THREE days after the birth of her son, Teresa Railton was ushered into a hospital room and told no amount of surgery and treatment would save his little leg from amputation.

She stopped the consultant and refused to hear one more word. Luca would walk: amputation would never be an option.

“I knew then that it was never going to happen,” remembers the 43-year-old, who lives near Malmesbury.

“For me it was never an option. From the moment he was born we knew our goal in life would be for him to keep his legs.

“Alex and I just hoped that medical science would improve; that there would be something we could do.”

Luca, who attends Prior Park School in Cricklade was born with no right knee, no right tibia and only a partial left tibia due to a rare condition called bilateral tibial hemimelia, which affects one in three million people.

His disability was only detected during Teresa’s 20-week scan. The radiologist was so utterly stunned at the sight of the foetus’s bowed legs on the machine that she excused herself. Teresa was immediately transferred from the Great Western Hospital to John Radcliffe in Oxford.

Luca was just 23 months when he underwent his first operation, an 11-hour procedure to fix metal frames to his legs. A German surgeon Professor Weber travelled especially to assist the team in Oxford. This would herald the start of more than 80 hours of surgery over the next ten years and a life punctuated by hospital appointments to allow Luca to move as comfortably as possible.

“I almost collapsed when he came round,” says Teresa, who works for Zeal Solutions Ltd in Swindon. “Alex and I knew that was the only chance we had to save his legs.”

As the years passed however, his legs deteriorated and the little boy found himself gripped by terrible pain.

Finally in February 2013, the verdict fell. Doctors in Oxford admitted defeat explaining no more could be done for Luca. His right leg would either have to be fused straight or amputated.

His parents immediately contacted Professor Weber who had relocated to Dubai. But as they prepared to uproot their entire lives to follow him to the Middle East in a bid to save Luca’s leg, they received an unexpected blow. He had lost his job and was in no position to help.

Thankfully, Luca’s godmother, Joady Roberts found some information online about an American surgeon, Dr Dror Paley, who had treated more than 200 patients with his Luca’s condition.

He agreed to take on the young patient at a cost of £135,000.

In autumn 2013, the Railtons embarked on a large fundraising campaign which saw them collect £100,000. If all else had failed they were prepared to remortgage their home to pay for the life-changing treatment.

The following March, they boarded a plane to Boca, Florida.

“Luca was much worse. He was in pain and reliant on his crutches. It was awful to see. Alex and I were and continue to be focused that there is only one goal and that is to save his legs. We never want him to come to us when he’s older and ask ‘Why was my leg amputated?’ “We have to do everything in our power for him. However, I do have moments of worry and sadness seeing Luca go through so much pain and think: ‘Have I done the right thing?’ “Then I reel myself back and think ‘I don’t want my child to lose his leg’.”

By the end of the month, Luca had received the first of four operations which involved correcting both feet by fusing them to the fibula. A frame was also placed on the right leg to rectify the bowing of his fibula. Following the surgery, his parents had to turn struts on the frame on Luca’s right leg every day for two months to correct the bowing. His left knee was also operated to ease his pain and discomfort.

After an agonising and lengthy healing period, his right femur was fused to the fibula in May.

In July, his right femur was broken and the frame was re-positioned to allow surgeons to lengthen his right leg. Finally, after a delay caused by a sudden growth spurt, the frame was removed and two rods were inserted through the right femur and the foot into the fibula. His leg was then placed into a cast which was removed at the end of January.

The family returned to the UK on December 19, nine months after setting off for America.

“The pain would bring him down and make him quiet more than anything but he never got frustrated with it. It was very hard; the last two weeks of August were the worst. Nothing could help him. He was in so much pain. The medication was not working, he had a fever, and he couldn’t sleep. But he was so strong.

“He has always been a kid who takes things in his stride. He is very strong minded and very determined. Luca focuses on being able; that’s what drives him.”

Watching her son take his first steps without callipers and with his feet planted firmly on the ground was the culmination of years lived in cautious anticipation of such a moment.

The Railtons are due to travel to Florida in October for a check-up. But the journey is far from over for Luca who will need to receive further surgery in the future to lengthen his right leg again. The rods inserted in his leg may also be removed. He will require a knee implant and his legs may require a few ‘tweaks’.

“To think of where Luca is now is amazing. The next goal is seeing him getting stronger every day, his walk improve, and not need crutches when he gets tired anymore. He will never be a footballer or rugby player but when he’s a little older he will be able to walk normally. That’s what matters.”

Luca is taking his recovery one day at a time but has not lost sight of his aim to ride a bike and learn to drive.

“It’s getting easier,” says Luca. “It was difficult at times because of the pain. The highlight for me was when the frame came off on November 19. And it makes it a lot easier to get dressed in the morning without callipers. I can wear skinny jeans and I just wear regular shoes now. I have had a lot of support. It’s been worth it.”

For updates of Luca’s progress go to www.face-book.com/lucarailton.