A tot born with a rare mutation which causes his foot to ‘grow uncontrollably’ has defied the odds to take his first steps — after his parents were told he would never walk.
Axel Horgan, 2, was born with a genetic condition called congenital lipomatous overgrowth, or CLOVES, which can result in vascular, spinal, skin, bone or joint abnormalities.
He is one of just 200 people in the world with the condition.
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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’d likely not live past the age of two or three and would never be able to walk, talk, go to the toilet, or eat.
In January 2025, their little boy will have both his feet amputated — so he can live pain free.
After the surgery, he will need physiotherapy to learn how to walk with two prosthetics.
Eddie, a lab technician from County Kerry in Ireland, says that after his son’s birth, he and Sarah were told to “take him home and enjoy him, because he would only have two to three years to live”.
“The specialists decided on amputation as they said it would give him increased function and less pain,” Eddie said.
“He’s in a lot of pain daily and it is hoped to improve his quality of life.”
Sarah says her pregnancy was healthy, and in May 2022, Axel was born at University Hospital Kerry, Ireland — weighing 10lbs 11oz.
He had a “port wine stain on his left side” and vascular overgrowths which were “clear to the eye”.
He went through rigorous genetic testing, including skin biopsies, ECGs, MRIs and various blood tests.
In July 2022, 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. 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 morphine for two weeks.
Doctors have said Axel’s CLOVES has made him more susceptible to certain types of cancer, such as Wilm’s tumour.
His amputation 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 surgery is planned for next year, and Axel will need to learn to walk with prosthetics for the rest of his life.
His current physiotherapy costs £170 ($A325) a week, which is set to increase to £320 per week after the surgery.
Axel’s parents, who live three hours from the nearest children’s hospital, have set up a fundraising page to help pay for expenses.
Eddie says the family has had to get private physio, as well as speech and language therapy, but support from the GoFundMe has been extremely helpful.
The fundraiser has received more than £42,000, which has “shocked” the family.
“We are so amazed by the generosity people have had,” Eddie said.
“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 treatment 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.”
