Belfast Telegraph

I'll never give up on Billy - brother's 300-mile run to fund life-saving surgery

By Cate McCurry

The brother of an 11-year-old Co Tyrone boy who suffers from a severe form of epilepsy is to run 300 miles around Northern Ireland to help raise funds for his life-saving surgery.

Little Billy Caldwell has been forced to leave his home in Castlederg for treatment that is available in America, but not in the UK.

The treatment costs hundreds of thousands of pounds, and it's a race against time to raise the cash as any one of the seizures Billy suffers every day could kill him.

His brother, Kyle Moore (32) will start the challenging run tomorrow while carrying the equivalent weight to Billy on his back as he raises funds for the £300,000 medical bills.

"Many times I have quietly sat, deep in thought, tears in my eyes, with very real images of the unthinkable, me carrying my wee brother in a white coffin," he said.

"Those sad images haunt me on a daily basis. But I can't let that happen. I love my wee brother. I will never give up on him. I will run with Billy on my back, so full of hope that if we all work together we can 'Keep Billy Alive' and bring him home safely."

Every time a life-threatening seizure strikes, Billy's oxygen saturation levels drop and he turns blue. While he awaits life-saving brain surgery, medics in Los Angeles have prescribed cannabis oil to keep his horrific seizures at bay.

Since starting the medicinal cannabis 16 days ago, Billy has suffered just one seizure - something his mum, Charlotte Caldwell describes as "amazing".

The surgery to remove the lesion on his brain is so invasive it carries the risk of wiping his memory and ability to speak.

Charlotte explained: "Our medical team here has informed us that even after Billy has surgery he will still require an epilepsy medication for at least two years to make sure he is seizure free. It is medical protocol after any form of epilepsy brain surgery. In Billy's case that would be medicinal cannabis, which is not legal in Northern Ireland. This would mean that we could not bring our superhero home, he would be a 'marijuana refugee" in LA. It would be very sad."

The desperate mother has issued a plea to the Health Minister to legalise cannabis oil so they can return home following the operation.

Kyle will also be delivering Billy's Santa letter - in which he asks for Father Christmas to stop his seizures - and a request from the youngster to urgently legalise medicinal cannabis to the Sinn Fein Health Minister Michelle O'Neill.

In a statement from the Department of Health, a spokeswoman said it is "sympathetic to the situation", adding "the Department of Health has received correspondence from, and on behalf of, several individuals regarding the potential medicinal use of cannabis or cannabis derivatives for the treatment of various diagnosed medical conditions, ranging from cancer to epilepsy and for the purposes of alleviating pain and other neurological symptoms.

"While we acknowledge the concerns expressed about the legal status of these substances, and are sympathetic to the situation faced by those who are suffering from debilitating illnesses and looking for alternative therapies to alleviate their symptoms, the Misuse of Drugs Act is a reserved matter and the Medicines and Healthcare products Regulatory Agency has the key role in the licensing of any medicinal product."

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