Coenie Chiari Malformation Journey
Started 2 months ago
Open end-date
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About This Campaign
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Dear Friends and Family,
We find ourselves reaching out in a time of need for our 12-year-old son, who has faced a challenging journey since an accident during a high jump in January 2025. Initially, we thought his severe headaches were just a temporary issue, but they persisted, leading us on a complex path of medical consultations and heartbreaking discoveries.
After an MRI, we were referred to a paediatric neurologist at Wilgers Hospital, where our son's discomfort was finally diagnosed as Arnold Chiari Malformation Type 1. This rare condition means that part of his brain extends into his spinal canal, causing severe headaches, trouble swallowing, and crippling leg pain—symptoms that have turned his once vibrant childhood into a struggle.
Despite trying various medications and therapies, his condition deteriorated, impacting his school work and daily activities. He lost his joy in sports, unable to play his favourite game of rugby and struggling to keep up with friends in cricket and softball. Each day is a reminder of ho...
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