A mother has described the heartbreaking moment she learned her two-year-old son has an extremely rare and incurable condition, after he went from a typical toddler to suffering a seizure in February. Reuben Suckley, who loves Liverpool FC, animals, and playing with his older brothers, was diagnosed with leukodystrophy, a fatal inherited disorder that causes rapid motor and cognitive decline.
Diagnosis and Symptoms
Kandace Giordani, 33, from north London, noticed Reuben was unsteady on his feet and had a weaker left side. He also stored food in his mouth without swallowing. Doctors initially suggested he was still developing, but when he stopped walking and began crawling, she rushed him to A&E after a seizure. An MRI revealed destruction of white matter on his brain, leading to the diagnosis of Krabbe disease, a form of leukodystrophy.
“It was a horrendous shock and a pain I can’t even explain,” said Kandace. “The consultant had limited knowledge because it is so rare. We had so many questions but no answers.”
Family's Response
Reuben’s aunt, Chelsie Osborne, 27, added: “It was surreal, a feeling of painful hopelessness.” The family has been told that only 50% of children with Krabbe disease live to age five, and they expect a decline in his ability to swallow, see, and hear. Kandace said: “The hardest part is not being able to do anything. There is no medicine, no treatment. That is my greatest heartbreak.”
The family is sharing Reuben’s story to raise awareness. Chelsie is fundraising £50,000 for a home soft play area, as public soft plays are not accessible and can trigger seizures. “Reuben just wants to be free and play like any other two-year-old,” she said.
Despite everything, Reuben remains happy, smiling, and learning Makaton sign language. “He is the happiest little boy,” said Kandace. “We are teaching him as much as we can, because time isn’t on our side.”
