The family of a five-year-old boy diagnosed with a devastating rare disease are fighting for funding for a pioneering new treatment. Lucas Henderson, from Bolton, was diagnosed with CLN2 type Batten disease, a genetic disorder which affects up to 50 children across the country.
The cruel illness has affected his speech, cognitive functions and mobility, and he suffers from seizures. After several trips to the doctors and hospital, Lucas was finally diagnosed earlier this year.
He is currently receiving bi-weekly hospital treatment to help slow the decline which it causes, but his parents Stacey and Ian are fighting for their son and other children to be given a new pioneering therapy which they hope could provide the 'cure'.
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Stacey said that trials have been undertaken on a five-year-old child in Brazil, which she said have proved positive. But she claimed that the tests have been halted due to 'insufficient funding'.
The family hope that someone with deep pockets will step in and assist Lucas and other children who are battling this devastating illness. "The cure is there, we just need somebody else," the mum-of-three said.
"There are plenty of billionaires out there." Stacey said Lucas' eventual diagnosis of CLN2 type Batten disease followed a long struggle for the family.
"We always knew there was something not 100 per cent," the 38-year-old said of her son. "He never really was able to speak properly."
She said that at first she thought Lucas may have been missing his development goals due to the Covid pandemic. "Initially it was put down to that," Stacey said.
"We fought for him for about two-and-a-half years, we knew something wasn't right." She said that Lucas underwent brain surgery, which allows him to receive a twice weekly treatment to reduce the negative effects which the disease inflicts.
"It won't help him regain anything, it will just stop him losing what he has," she said. Lucas attends special school, and his illness has robbed him of many everyday pursuits which most children take for granted.
"He is not your average five-year-old, he can't really play in a play area like a normal child would," she said. Everything is affected, all our lives are affected by it."
Commonly the disease causes children to go blind, and can ultimately prove fatal. Stacey says that sadly Lucas' long term prognosis is 'not very good', but she hopes that the new treatment, which is not currently approved for use in the UK, could make a difference to the lives of her son and other children.
Stacey has started a petition which can be viewed here.
