Axel was born on May 12, 2022, in University Hospital Kerry with multiple congenital abnormalities and severe health issues. Despite predictions of a short life expectancy, Axel has defied the odds through continuous medical interventions. Initially, he faced numerous challenges, including hypoglycemia, respiratory sepsis, and various congenital abnormalities. After extensive testing and multiple hospitalizations for conditions such as cellulitis and lymphatic malformation, Axel was diagnosed with PIK3CA-related overgrowth syndrome, including Cloves Syndrome and Klippel-Trenaunay Syndrome. He is one of fewer than 200 people globally with Cloves Syndrome.
Axel’s medical journey has been arduous, involving 16 hospitalizations for severe infections and complications. In August 2023, he began oral chemotherapy to manage his condition, which unfortunately led to complete speech regression and multiple seizures. In September, Axel underwent surgery to remove the nails and nail beds from his left foot due to chronic infections. Despite the treatment, he continued to face severe anemia and other complications.
In November 2023, Axel traveled to Paris for treatment with vascular anomalies specialist, Professor Canaud. Due to severe issues with his left foot, amputation was deemed necessary. Axel now travels to Paris every six weeks for ongoing treatment, funded by his parents. Additionally, he requires significant physiotherapy, speech therapy, and various medical consultations, none of which are covered by the HSE.
The fundraiser aims to support Axel’s extensive medical needs and ensure he receives every possible treatment to surpass his initial prognosis. Your donations will help cover travel, accommodation, therapy, and medical costs, giving Axel the best chance in his challenging journey.
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Follow Axelβs journey on Instagram: @axelsjourney_pros.
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