Two-year-old Reuben Suckley, who seemed like a healthy toddler, was diagnosed with an extremely rare and fatal condition that many doctors had never encountered. His mother, Kandace Giordani, 33, from north London, noticed something was wrong when Reuben collapsed with a seizure in February 2026. A week later, he was diagnosed with leukodystrophy, a group of rare disorders that cause progressive damage to the brain's white matter.
A Devastating Diagnosis
Kandace described the diagnosis as a horrendous shock. The consultant had limited knowledge because the condition is so rare. Further tests revealed Reuben has Krabbe disease, a rapidly progressive form of leukodystrophy. Doctors informed the family that only 50% of children with Krabbe disease live to age five. There is no cure, and the family has been advised to make Reuben as comfortable as possible.
Early Signs Missed
Before the seizure, Reuben had shown subtle symptoms: weakness on his left side, unsteady walking, and storing food in his mouth. Doctors initially attributed these to normal development. But when he stopped walking and began crawling again, his family knew something was wrong. He also made jerking motions that turned out to be seizures.
Life with Krabbe Disease
Reuben is now monitored by multiple specialists, including a neurologist and therapists. His mobility has declined, and he never fully developed speech. The family expects further deterioration in swallowing, vision, and hearing. Despite this, Reuben remains a happy child who loves animals and Liverpool Football Club. He communicates using Makaton sign language.
Fundraising for a Safe Space
Reuben's aunt, Chelsie Osborne, 27, is fundraising £50,000 to build a home soft play area with padded walls, flooring, and a ball pit. Public soft plays are too dangerous due to climbing structures, older children, and noise that triggers seizures. The family wants to give Reuben a safe environment to play and keep moving, as recommended by his physiotherapist.
Kandace said: "The hardest part is not being able to do anything about it. As a mother, you would do anything to help your child. But there is no medicine, no treatment." Chelsie added: "Our goal is just to do everything we can for him to live life as happily and safely as he can."
