Overview
- Otto Sparkes, a four-month-old from Hull, was diagnosed with infantile Krabbe leukodystrophy in May 2026 and clinicians told his parents he has roughly 13 months to live.
- His early signs — constant crying, feeding trouble, severe startle reflex, stiffening, thumbs fixed in palms and loss of smiling — were initially treated as reflux, colic or milk allergy before deeper tests produced the diagnosis.
- Doctors reached the diagnosis after a lumbar puncture and extended blood and genetic database testing that found the rare, degenerative condition that strips myelin from nerves and causes progressive loss of movement, sight, hearing and breath control.
- The family have launched a JustGiving page and local events to fund trips such as a beach visit and Disneyland while they seek specialist palliative support and make memories.
- Because Krabbe is inherited, the parents face a 25% recurrence risk for future children and are exploring IVF, prenatal screening and early treatment options such as newborn stem cell transplant.