A Kerry family is appealing for support for brave Listowel toddler, Axel Horgan, who is facing a double leg amputation.
Little Axel, from Listowel, who turned two earlier this month, is one of only 200 children worldwide who suffer from Cloves syndrome, an extremely rare congenital – present at birth – disorder characterised by a combination of vascular, skin, spinal, and bone or joint abnormalities.
Axel’s courageous fight has drawn support from MMA star Conor McGregor and other well known names, who are joining in an appeal for support for the little boy, as he continues to battle against the life-limiting condition, which will include a double leg amputation.
Born in May 2022, in University Hospital Kerry, following a completely normal and healthy pregnancy, baby Axel was unexpectedly diagnosed with having multiple congenital abnormalities at birth, along with fetal macrosomia, hypoglycaemia, and respiratory sepsis.
He was transferred to Crumlin Children’s Hospital as a newborn, where further tests were carried out. As a newborn, he was hospitalised three times – once with cellulitis, and twice with stomach and bowel lymphatic malformation.
He remained in hospital for three weeks with only IV fluids. Following a skin biopsy, Axel was diagnosed with PIK3CA related overgrowth syndrome; as part of his condition he suffers from Cloves syndrome and Klippel Trenaunay syndrome.
As a small baby, Axel returned to hospital a further 16 times – 11 times for cellulitis which resulted in sepsis on multiple occasions, bowel blockage due to malformation resulting in needing a tube for feeding, and cellulitis and cystic lesion of a lipoma on his back. At this stage, the small boy was unable to lie down or sit against anything for two full weeks without requiring morphine.
His parents, Sarah Curtin and Eddie Horgan, were told that their little boy would never eat, drink, speak, or live a normal life, and were initially advised to bring their newborn home and enjoy him while they could. Axel has been given a life expectancy of three years at the very most. Two years on, Axel is now a proud big brother to one-month-old Arlo, and his courageous fight has won the hearts of people up and down the country.
“We’ve been inundated with people sharing their stories with us, and complete strangers have reached out to tell us how his story and his smile through it all has touched them,” dad Eddie says.
“He’s inspired us as parents, and he’s also inspiring people that we don’t even know.”
“We hope that with this treatment, Axel will be able to go to preschool at a normal age, and hopefully Axel and Arlo can learn to walk together.”
Speaking to Gript, Eddie said the support from the local community has been nothing short of amazing, with the people of Listowel rallying around Axel in recent months.
In August last year, Axel started on an oral chemotherapy drug used as a treatment for stage four cancer. This, Eddie explains, was used to target his overgrowth syndrome. However, an unfortunate result of the gruelling treatment resulted in a complete speech regression for the toddler as his brain was also affected.
“Axel had a good few words, but he had to start medication to try and shrink the overgrowth. Unfortunately, it shrank everywhere, including the brain, so he had a full speech regression and lost all of his words. That has been tough as parents, but we are trying to get awareness out there as much as we can. We want to do this for other parents as well.”
The two-year-old was diagnosed with global developmental delay with multiple abnormalities in his central nervous system, and also suffered from several seizures.
“From the second he was born, we knew baby Axel was very unwell. He was very badly affected by Cloves syndrome, and we noticed that his left leg was very overgrown.
“Doctors hoped that medication would bring it down – and it did a small bit. However, we learned in February that ultimately, Axel’s left leg would have to be amputated. Further MRIs and X-rays were done, after which doctors decided they needed to amputate the right leg as well.
“If it could be possible, we were preparing ourselves as best we could for a single leg amputation. To learn it is both was a bit of a shock, but we are trying to stay as positive as we can for Axel, and we just hope that everything will go well,” Eddie says.
The family have been spurred on to stay positive at such a difficult time, Axel’s parents say, due to the outpouring of love and attention from people across Ireland.
“Here in Kerry, we are meeting people every day who are constantly checking in and asking us, “How’s Axel?” We’ve set up an Instagram page and there has been an absolute outpouring of support. People have been asking us every day how he is, and encouraged us to organise some kind of event or fundraiser.
“Not only in Kerry, but all over Ireland, we’re getting a lot of support. People do genuinely care about Axel. We’ve been getting messages on our Instagram page every day, and we’ve had people who’ve been going through a tough time telling us that seeing Axel’s smile has brighterned their day.
“People we don’t even know have stopped us in the street and asked, “Is this Axel?” because they’ve been following his journey online. People are keen to fundraise and keen to help Axel, which means so much to us as parents.
“It’s such a rare condition. Axel is one of only 200 children with this condition. We went to Crumlin Children’s Hospital straight after Axel was born – through the pregnancy, every scan was perfect – so then when Axel was born, it was a massive panic, and we were straight to Crumlin where he was diagnosed. He went to Belgium for treatment as a baby.
“All over Kerry, people we don’t even know have messaged us asking how Axel is doing. “We have had great support. We are in Paris every six weeks or so. We really appreciate all of the good wishes and the support, and it keeps us going.
“It has definitely been a roller coaster.We’re just trying to get his story out there as best we can, and bring as many eyes to the fundraiser. We’re meeting so many parents in Crumlin whose children have such rare conditions, and that has opened our eyes as well, and encouraged us to raise awareness of the rare diseases that are out there.”
The outpouring of support has extended to an Instagram video message, posted by Conor McGregor, promoting a white collar boxing event – to be held on September 7th in Listowel – to raise money for treatment. Michael Conlan, the Olympic boxing medalist, has also thrown his support behind Axel, while the family have also received an original art piece from Kerry artist, Mike O’Donnell, to help with the two-year-old’s fundraiser.
We have very generously received this original, very rare art piece from the very talented Mike O'Donnell to help with Axels fundraiser @mikodonnell
A portrait of Gerry ‘the Monk’ Hutch, it is part of the Released Collection exhibited in St John’s Listowel recently.
There will… pic.twitter.com/W3OrOYcHdg— Eddie Horgan (@EddieHorgan) May 28, 2024
“We are blown away by the support, and really appreciate it,” Eddie said.
In September, the little boy had his first surgery in Crumlin on his left foot.
His dad recalls how medics had to completely remove every nail and nail bed down to bone, after which Axel remained in crumlin for a week, suffering with chronic anaemia which required blood transfusions.
In November 2023, Axel travelled to Paris, France, to undergo further treatment, which was carried out by anomalies specialist, Professor Guillaime Canaud.
Because the toddler was unable to mobilise and the skin on his left foot began to break down, doctors carried out further tests with the hope of performing further surgery on his foot, however, his anaemia had to be treated. In February of this year, on a visit to Prof Canaud in Paris, the family received the news that amputation was the only remaining option for Axel and his mobilisation.
He now has to travel to France every six weeks, with travel and treatment funded by the family, in order to attend Prof Canaud, who is the Chief of the Overgrowth syndromes and vascular anomalies Unit at Necker Enfants Malades Hospital in Paris. It was while treating stage four breast cancer that Prof Canaud discovered that oral chemotherapy, ‘alpelisib’ would also help children like Axel, who have PIK3CA gene mutation.
Although very tough on Axel’s body, the treatment initially worked well to shrink Axel’s leg and the overgrowths around his body.
Because Axel has osteoporosis of his left leg bone, it means that following amputation, he will require a further procedure to attach a stability rod to his femur to support a prosthetic – while his right foot will also need amputation surgery.
Eddie explains that it has not yet been decided whether his right leg will be above or below the knee, which has a very long recovery time. His fingers on his left hand were also affected and will require debulking and wiring surgery as they will not be functional as he ages.
Despite Axel’s tough start in life, dad Eddie says the little boy continues to be “just like every other child.”
“He’s just a very happy child, and he’s very resilient. He has taught us so much and has given us a new appreciation for life — to appreciate life for what it is, rather than what we want it to be,” Eddie says.
“As parents, we have gained a completely different outlook on life. We’ve learned what tough is, and we’ve learned what resilient is. So many things, like waking up in the morning and going to work, before Axel was born, we took for granted. But now we appreciate every little thing. Axel has changed our lives totally, and has taught us so much.”
“We also want to spread the message that it’s ok to look different; that you might not fit into the social norms, but that’s ok. We’re still so proud of Axel, and we want him to know he can be whatever he wants to be.”
At present, Eddie and Sarah attend Crumlin Children’s Hospital a minimum of three times a month, which involves seeing his neurologist, endocrinologist, gastro consultant and Axel’s Consultant, Professor Alan Irvine.
Eddie explains that this involves significant travel and accommodation costs, with the family travelling to Dublin from Listowel.
Axel also attends speech and language therapy, and has received HSE physio, but Eddie told Gript that this has been “extremely inconsistent.”
“We have had three HSE physiotherapy sessions altogether between November and April, so that has been extremely scarce. The sessions have been so inconsistent, leaving us with no choice but to go private – but unfortunately, the private sessions are €75 per session.
“At the moment, Axel goes for two sessions a week. Because of his condition, the physiotherapist has recommended that Axel goes for four sessions a week post-amputation, which is then €300 a week.”
“Absolutely none of this is funded in any way by the HSE or any other means,” Eddie explains.
“We are trying to raise funds to give Axel the best chance, and to fund costs including physiotherapy and also his treatment in Paris, which is every six weeks. As parents, we have had to take a lot of time off work, so the financial help so far has been unreal. It has helped hugely.
“The aim of the fundraiser is that Axel will receive every possible treatment to ensure he lives longer than the three years he has been given. We want to give Axel the best chance on his journey, and we are incredibly grateful to everyone so far who has supported us,” the proud dad says.
You can support Axel in his fight against Cloves at the GoFundMe page here and also visit his Instagram page, Axel’s Journey, by clicking here.