Leanne Barker, a mother from Rishton, Lancashire, is urgently raising the final £15,000 needed to take her nine-year-old son Olly to Mexico for specialist treatment. Olly has SYNGAP1, an extremely rare genetic disorder affecting brain development, causing epilepsy, autism, learning disabilities, and developmental delays. He is non-verbal and suffers more than 40 seizures daily.
Family's Struggle and Diagnosis
Leanne first noticed concerns when Olly was a baby, failing to reach milestones like sitting up or feeding properly. At six weeks, doctors suspected deafness, but by eight months he still could not sit. After seizures began at age three and a half, he was diagnosed with SYNGAP1 at age five. At the time, only 1,000 people worldwide were known to have the condition.
Leanne recalled his first major seizure: "We were at KFC in the drive-through and my other children saw that he went blue." The incident was traumatic for the family, as Olly could not communicate his feelings.
Daily Challenges and Determination
Now nine, Olly requires full-time care, wears nappies, and struggles with mobility, pain, and fatigue despite two epilepsy medications. Leanne describes him as "the most determined little boy," who spends months mastering tasks like learning to hold objects.
Treatment in Mexico
The family has booked Olly's place in a 32-day NeuroCytonix programme at a dedicated research centre in Mexico. This experimental treatment aims to stimulate regrowth and repair of damaged brain cells. Total travel costs are around £40,000; the treatment itself is paid, but £15,000 is still needed for remaining expenses.
Leanne hopes the programme will reduce seizures, improve cognition, and boost independence. "I could look after Olly forever, but one day I won't be here," she said.
Fundraising Efforts
Leanne has organised walks (33 miles to Southport, 27 miles to Blackpool), sponsored swims, football matches, raffles, and family fun days. She works full-time alongside partner Neil Hung, 43, while caring for Olly and his three brothers, aged 18, 14, and 10.
"Olly has to struggle day in and day out. We love him and we'll do anything for him," Leanne said. Donations can be made via the family's GoFundMe page.
