Tot with uncontrollably growing foot takes first steps against the odds
- 2 days ago
A tot 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'd never walk.
Axel Horgan, two, was born with genetic condition congenital lipomatous overgrowth (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.
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 never be able to walk, talk, go to the toilet, or eat.
In January 2025, he'll have both feet amputated so he can live pain-free 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 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.
"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 on May 12, 2022, 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 rigorous genetic testing, including skin biopsies, ECGs, MRIs and various blood tests and 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 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 morphine for two weeks.
Doctors have said Axel’s CLOVES has made him more susceptible to certain types of cancer - like 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 amputation 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 to this 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
Axel Horgan, two, was born with genetic condition congenital lipomatous overgrowth (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.
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 never be able to walk, talk, go to the toilet, or eat.
In January 2025, he'll have both feet amputated so he can live pain-free 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 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.
"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 on May 12, 2022, 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 rigorous genetic testing, including skin biopsies, ECGs, MRIs and various blood tests and 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 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 morphine for two weeks.
Doctors have said Axel’s CLOVES has made him more susceptible to certain types of cancer - like 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 amputation 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 to this 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