A father from Sutton Coldfield is appealing for donations to fund pioneering treatment in the United States for his five-year-old son, who has an ultra-rare condition that leaves him unable to talk or chew food.
Tom Harris, 35, a teacher from Mere Green, is seeking to raise funds for two weeks of intensive neurological therapy at NeuroSolution LC in Lake Charles, Louisiana, for his son Christopher Harris. The treatment costs £11,200 per week and is not covered by any insurance.
Ultra-rare ZTTK syndrome diagnosis
Chris was diagnosed last August with ZTTK syndrome, a severe genetic multi-system disorder. Only around 500 people are believed to have the condition worldwide, with just 65 cases listed in scientific literature. The disease has only been known about since 2016.
ZTTK is described as an 'ultra-rare, monogenic, neurodevelopmental disease'. It is caused by a mutation on the SON gene, on human chromosome 21 – the same chromosome affected in Down's Syndrome. There is no known cure.
Tom said: “It’s really rare. There are believed to be around 100 to 200 cases a year. Nobody knows what the prognosis is into adulthood.”
Daily challenges and development delays
Because of the condition, Chris cannot chew and eat proper food, so he is unable to receive the nutrients other children get, which in turn hinders his development. He cannot build muscle and will require care for the rest of his life. He also cannot talk and still wears nappies.
Tom explained: “Chris can’t do a great deal. But he recognises people. Because he can’t chew, he can’t develop muscle. We have to mash food for him. The only way we can feed him is with a spoon.”
Chris lives in the United States, near New Orleans, with his mum Brittany and sister Camdyn. Tom travels from the UK as often as he can after his divorce from Brittany. Tom described Chris as 'more like a two-year-old' as he is 'tiny'.
Treatment hopes and fundraising efforts
The treatment at NeuroSolution LC, which includes laser therapy and infrared treatment, is intended to stimulate Chris's brain to develop the ability to chew. Tom said: “He’s had all sorts of therapies and they help but because his brain isn’t sending signals to the body, the other therapy effects are minimal.”
Chris started treatment two weeks ago and will have more sessions in September and October. Tom has set up a GoFundMe page which has raised more than £6,000 so far. He is also running the Abingdon Marathon in October to help pay for the treatment.
On his GoFundMe appeal, Tom wrote: “We do not know what the future holds in terms of life expectancy, but Chris will need care for the rest of his life. We are desperate for a better life for Chris and he is going for intensive neurological treatment in Lake Charles, Louisiana. We do not know for certain this treatment will help Chris, but we are praying it will in some way, no matter how little. The treatment is 15,000 dollars (£11,200) per week for two weeks and is not covered by insurance.”
Tom, who went to The Arthur Terry School in Sutton, said he felt guilty asking people for money as there were no guarantees the treatment would work. He said: “That’s the hard part really. There’s no guidebooks to go from. There’s nothing out there. He’s a bit of a trailblazer.”
A happy child with a unique laugh
Despite his challenges, Tom says Chris is a happy child with a 'unique laugh' and is 'somewhat oblivious' to his condition. Tom said: “He’s happy. He has lots of energy. He enjoys spending time with his family. He lives with Camdyn, who has just turned eight. Whenever she’s in the room his face lights up. She does gymnastics and he will be there giggling. He has got a unique laugh. People hear his laugh in the supermarket and know who it will be.”
Tom added: “Every little helps [with the GoFundMe]. Even if people can support it in other ways like sharing it.”
