Life

Leona O'Neill: Let's back epilepsy warrior Billy Caldwell

Billy Caldwell and his mother Charlotte with Castlederg High School staff and students who are supporting Billy's Cannabis Walk
Billy Caldwell and his mother Charlotte with Castlederg High School staff and students who are supporting Billy's Cannabis Walk

THE love of a mother knows no bounds. A mother would go through a brick wall for her child, fight to the death to protect them, sacrifice everything she has for them and never, ever give up hope on them.

One woman who is proving every one of these sentiments true is Tyrone mother Charlotte Caldwell. When he was just a baby, doctors sent the Castlederg mother's little son Billy – who suffers from a rare life-threatening form of epilepsy – home to die. At his worst, Billy would suffer 100 seizures in a day. He was too ill, they said; there was no hope, they said. They offered end-of-life care and told his heartbroken mother to prepare for his funeral.

Refusing to accept this dire diagnosis, Charlotte embarked or an amazing journey across the world to Los Angles to seek help in the form of innovative medical procedures not available in the north and medicinal cannabis to keep him alive. She has raised over £100,000, faced down governments and various authorities over his treatment and captured the hearts of Northern Ireland. And this week she and 11-year-old Billy are finishing an epic 150-mile journey to meet doctors at the Royal Victoria Hospital in Belfast to ask if they can take over his care, using medicinal cannabis, from his doctors in LA.

The mother-and-son team have walked through towns and cities in Northern Ireland this week, being cheered on by hundreds of supporters and given a warm welcome in each port of call by people from all walks of life who are in awe of the strength of this ordinary mother thrust into extraordinary circumstances in life. The wind howled and the rain drenched the pair as they walked country roads. When Billy got tired, Charlotte lifted him onto her back and soldiered on.

They celebrated in one town with purple balloons and party poppers the fact that Billy was now 50 days seizure free due to the medicinal cannabis he was prescribed. Billy's condition is so serious that one more seizure could kill him. Billy and his mum will return to America in the coming weeks for a life-saving operation on his brain, so long as the seizures stay away.

Charlotte doesn't see herself as a hero. She sees herself as an ordinary mother just trying to keep her son alive.

“Take a look at my little Epilipsy Warrior,” she said. “This is the boy the hospital sent home to die. But I would not give up on Billy. I will never give up. We both have endless hope, endless faith and endless love for one another.

“Here he is today walking tall, head high and heart strong, 150 miles to Belfast to beg for his right to live. He is begging they recognise the medicine that is keeping his life-threatening seizures away – medicinal cannabis. Medicinal cannabis has given me back my right as a mummy to hope, but the most important thing, it has given Billy back his right to life. We need our wee country to come out and support him, stand up and make the change.”

The inspirational mother and son will arrive at the Royal Victoria Hospital tomorrow to meet doctors and clinicians in the hope that they will take over Billy's treatment with medicinal cannabis or CBD/THC.

Wouldn't it be a beautiful thing if we could all be there to welcome the pair to Belfast, to cheer them on and to walk those final footsteps with this awe-inspiring mother as she fights to keep her son alive? Wouldn't it be amazing to say to that mother, who has been through more than what might break many of us, that we are standing shoulder to shoulder with her and that we too believe that her little boy is worth fighting for?

Charlotte and Billy will arrive at the Royal Victoria Hospital at 1pm on Wednesday.

If you'd like to donate to the Keep Billy Alive fund log on to www.justgiving.com/campaigns/charity/just4children/keepbillyalive2