Support Axel in his fight against Cloves
Donation protected
Axel was born on 12th of may 2022, in university hospital Kerry. Following a “healthy” pregnancy, axel was unexpectedly born with multiple congenital abnormalities, fetal macrosomia, hypoglycaemia and respiratory sepsis. Doctors carried out multiple blood tests, chromosome testing and ultrasound head to toe, with mri full body done at 8 days old. We were told he would never eat, drink, use the toilet, sit, speak or live a normal life. We were told to take him home And enjoy him while we had him with a life expectancy of 3 years at the very most .
He was transferred to crumlin where they carried out further testing including a punch hole skin biopsy, echo, cardiac monitoring and multiple bloods tests. Axel is at high risk of childhood cancers and has monitoring scans every 3 months. While we awaited results of his skin biopsy, he was hospitalised three times, once with cellulitis, twice with stomach and bowel lymphatic malformation whereby a cyst had closed off entry from stomach to bowel. He remained in hospital for 3 weeks with only iv fluids.
Axel was confirmed to have PIK3CA related overgrowth syndrome. As part of this, he suffers from cloves syndrome and klippel trenaunay syndrome. Axel is one of less than 200 in the world to have Cloves
The following months axel was hospitalised 16 times, 11 times for cellulitis which resulted in sepsis multiple times, bowel blockage due to malformation resulting in needing a tube for feeding and cellulitis and cystic lesion of a lipoma on his back. He was unable to lie down or sit against anything for 2 weeks without morphine.
August 2023 axel started on an oral chemotherapy. This was used to target his overgrowth syndrome. Unfortunately as his brain is also affected by this condition, he has suffered a complete speech regression. He was diagnosed with global developmental delay with multiple abnormalities in his central nervous system. He was having several seizures also. In September he had his first surgery in crumlin on his left foot, they completely removed every nail and nail bed down to bone. Axel remained in crumlin for a week, with chronic anemia which required blood transfusions.
At this point, Axel travelled to Paris in November 2023 for further treatment by a vascular anomalies specialist, Professor Canaud.
As axel was unable to mobilise and his skin on his left foot began to break down they decided to do further tests with hopes of further surgery on his foot, but had to get his anemia under control. Again in feb 2024 axel went to Paris where they confirmed amputation was axel only option to be able to mobilise. Axel now much travel to Paris every 6 weeks, funded by his parents, to attend Prof Canaud.
Unfortunately axel has osteoporosis of his left leg bone and will need further procedure to attach a stability rod to his femur to support a prosthetic. His right foot will also need amputation surgery. It is not decided yet whether his right leg will be syme or below knee, this has a very long recovery time. His fingers on his left hand were also affected and will required debulking and wiring surgery as they will not be functional as he ages.
The aim of this fundraiser is in hope that Axel will receive every possible treatment to ensure he does live longer than the 3 year the doctors have told us.
At present, we are in Crumlin a minimum at 3 times a month- to see his neurologist, endocrinologist, gastro consultant and his consultant Professor Alan Irvine. This involves a lot of travel and accommodation costs.
He attends physio in First steps therapy Patrickswell, at present this costs 150 a week for 2 sessions. This will increase to €300 a week post amputation. Absolutely none of this is funded in any way by HSE or any other means.
He attends Professor Canaud every 6 weeks in Paris which health service prices , accommodation and travel must be paid for by his parents.
He also attends speech and language therapy which isnt covered by HSE funding
The aim of this fundraiser is to give Axel the best chance in his journey!
He also has an instagram to document his journey!
Organizer
Eddie Horgan
Organizer