A father from Sutton Coldfield is appealing for financial support to fund specialist treatment in the United States for his five-year-old son, who suffers from an ultra-rare genetic disorder that affects his ability to eat and speak.
Christopher Harris lives with ZTTK syndrome, a severe neurodevelopmental disorder caused by a mutation in the SON gene on chromosome 21-the same chromosome linked to Down’s Syndrome. Only approximately 500 cases are known globally, with just 65 documented in scientific literature since the condition was first identified in 2016.
Due to this condition, Christopher cannot chew food properly or speak, and he remains in nappies. These challenges have significantly hindered his development, leaving him comparable to a two-year-old and unable to build muscle.
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Christopher resides near New Orleans with his mother and sister, Camdyn. His father, Tom Harris of Mere Green, travels from the UK regularly to be with him following a divorce. Tom, a teacher in Kingstanding, is fundraising to cover the cost of innovative neurological treatment at NeuroSolution LC, a neuroscience specialist centre in Louisiana.
The treatment involves laser and infrared therapy, aims to stimulate Christopher’s brain functions to improve his ability to chew and eat normally. However, the therapy is costly at £11,200 per week, is not covered by insurance, and is considered experimental.
Christopher began a two-week course of treatment recently, with additional sessions planned for September and October. To help finance the therapy, Tom has created a GoFundMe page that has already raised over £6,000. Additionally, Tom plans to run the Abingdon Marathon in October to raise further funds.
Tom explained the challenges they face, noting that Chris “can’t do a great deal” but recognises people. Feeding requires food to be mashed and presented with a spoon, as Chris cannot chew due to the brain’s impaired signalling. Despite various therapies, progress has been limited, making this new treatment a hopeful avenue.
Despite his condition, Christopher is described as a happy and energetic child with a distinctive laugh that brings joy to those around him, especially when spending time with his sister.
Tom expressed gratitude for the community’s support and encouraged donations, however small, as well as sharing the fundraising campaign. “We are desperate for a better life for Chris,” he said. “While we cannot guarantee the treatment will work, we hope it offers some improvement.”
The family’s strong bond and hope for progress highlight the struggles faced by those living with rare conditions and the determination to seek every possible avenue for improvement.