Axel Horgan, two, was born with a rare genetic condition called congenital lipomatous overgrowth – which can result in vascular, spinal, skin, bone or joint differences.

A toddler born with a rare mutation which causes his foot to “grow uncontrollably” has defied the odds to take his first steps after being told he might never walk.

Axel Horgan, two, was born with the genetic condition congenital lipomatous overgrowth (CLOVES) – which can result in vascular, spinal, skin, bone or joint differences. He is one of just 200 people in the world with the condition. Axel’s left leg was “very large from birth” and has been growing ever since.

His parents, Eddie, 27, and Sarah, 27, a nurse, say their son has “proved doctors wrong” – after being told he might not live past the age of two or three and may never be able to walk, talk, go to the toilet or eat independently. In January, he’ll have both feet surgically removed so he can live more comfortably and he’ll need to learn how to walk with two prosthetics in physiotherapy.

Eddie, a laboratory technician, from Listowel, County Kerry, Ireland, said: “When a child has a rare illness they face two battles. One is the illness itself and the other is living in a world where so few people understand what you’re up against. We were told to take him home and enjoy time with him – because he might only have two to three years to live.

“The specialists decided on the procedure as they said it would give him increased mobility and less pain. He’s in a lot of discomfort daily and it is hoped to improve his quality of life.” Sarah says her pregnancy was healthy, Axel was born at University Hospital Kerry, Ireland – weighing 10lbs 11oz.

He was born with a “port wine stain on his left side” and vascular overgrowths which were “clear to the eye.” He went through extensive genetic testing, including skin biopsies, ECGs, MRIs and various blood tests and he was diagnosed with CLOVES. Sarah said: “I love my boy regardless and I was prepared to do anything, no matter what the test results that would come back he will always be my baby.”

Axel was later hospitalised and required a feeding tube. He was unable to lie down or sit up without strong pain relief for two weeks. Doctors have said Axel’s CLOVES has made him more vulnerable to certain serious illnesses – like Wilm’s tumour. His surgery was decided when Axel was 18 months old and he had assessments from his physiotherapy, x-rays and MRIs, he was also in pain regularly.

The procedure is planned for next year and Axel will need to learn to walk with prosthetics for the rest of his life. He currently receives physiotherapy at First Steps Physiotherapy Limerick and CDNT Listowel – and his parents pay £170 per week. But the cost is expected to go up to £320 per week – after the surgery.

Eddie said: “Due to the lack of HSE resources, we have had to get private physio and speech and language therapy. The support from the GoFundMe has been really helpful going forward. He will have prosthetics instead – by the time he’s older he won’t know any different.

“He’s such a happy baby and we want him not to have any pain, we’d do anything for him.” Axel’s parents live three hours from the nearest children’s hospital and have set up a fundraising page to help pay for expenses. The fundraiser has received almost £40k which has “shocked” the family.

Eddie said: “We are so amazed by the generosity people have shown. The community are doing this themselves, they come to us and offer to fundraise for his treatment. Axel is pretty much non-verbal at the moment, as parents we are worried about how other kids will treat him.

“But we will do our best to fill him with confidence and acceptance and that it’s OK to look different. We hope people won’t judge a disability by its visibility.”

Sarah said: “We are hopeful for his future, he’s getting the best care he needs and deserves, and we are proud of Axel. We feel helpless at times but Axel and his brother, Arlo, give us reasons to be grateful, hopeful and happy.”