The parents of a young boy diagnosed with a rare brain disorder are using their story to raise awareness after an initial misdiagnosis linked to common cold symptoms.
Five-month-old Arlo Paton was found in a concerning state at his family home in Carluke, South Lanarkshire, in March of last year. His mother, Chloe McEwan, 24, explained that they found him “floppy” and running a high fever after placing him down for a nap. The infant was immediately rushed to University Hospital Wishaw, where doctors initially diagnosed him with febrile convulsions—seizures triggered by a fever in young children.
Chloe and her partner Andrew Paton, 26, were told Arlo would likely recover in a few days, but his seizures continued for months. By July, after further tests, Arlo was referred to a pediatric specialist to investigate the persistent symptoms.
In September, an MRI scan revealed the devastating diagnosis: Leukodystrophy, a rare genetic disorder that causes damage to the brain and spinal cord. The condition often impairs basic motor functions and can have severe long-term effects.
Chloe recalled the moment she and Andrew were informed of the diagnosis: “Our world came crashing down when the doctor explained Arlo’s MRI showed signs of leukodystrophy. I had never heard of it,” she said. “The specialist warned us not to Google it, and we were left in a daze, unsure of what our next steps should be.”
Leukodystrophy affects about 100 types of rare brain disorders, most of which are degenerative and lead to loss of motor skills, speech, vision, and cognitive abilities. The Paton family has been supported by the Alex Leukodystrophy Charity, the UK’s only charity dedicated to helping families impacted by the disorder.
Chloe and Andrew were informed that Arlo’s case could be one of the rarest types of the disease, with no clear prognosis. “We don’t know what symptoms to expect or how things will progress,” Chloe said. “But while we wait for more results and tests, we’re using our time to raise awareness and funds for the charity that has been a lifeline for us.”
Arlo, now 16 months old, is currently on medication to help manage his seizures. Despite his condition, Chloe describes him as a cheerful and resilient child who continues to amaze his parents with his determination. “You’d never know he was unwell,” Chloe shared. “He’s such a happy little soul.”
The family is committed to spreading awareness about Leukodystrophy, hoping their experience can help others who may be facing similar challenges.
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