The Cardiff boy’s family has been raising money to access life-changing surgery in the United States
TWO Cardiff businesses have donated a huge sum of money help an eight-year-old boy fly to America to access world-leading epilepsy treatment.
The family of Caleb McCarthy had been aiming to raise £120,000 to help their son, who has been suffering with life-threatening seizures since he was three years old.
The treatment for epilepsy offered by the NHS in Wales and England is not as advanced as in the US, and so Caleb has been receiving private treatment from Dr Luke Tomycz in New Jersey.
Parents Kirsty Rosser and Stewart McCarthy, and younger brother Cameron, have been raising money for another trip to the US so Caleb can undego a third operation.
The family, who live in Canton, paid for the previous trips themselves but need help to finance the next one with both parents having to give up work, or reduce their hours greatly to spend time with Caleb.
After hearing the family’s story, energy companies City Energy Network and Heatforce UK stepped in to donate £87,000 – the sum required to finish off their campaign – in what Kirsty described as an “overwhelmingly kind act”.
“One of the school mums Najla Roberts, who I had never actually met, held a fundraiser at her office for Caleb,” said Kirsty, a part-time hairdresser.
“She raised an amazing £1,700. Following this, her boss read more about Caleb’s story and the companies offered to pay the remainder of our fundraiser goal. We still can’t believe it.
“If it had not been for the huge effort of our community, her boss never would have known. The support made us realise that we truly aren’t alone in this nightmare.”
The final donation was added to more than 1,200 individual GoFundMe donations, meaning just under £127,000 has been raised for Caleb since December 2023.
The family are aiming to get Caleb to New Jersey for surgery at the beginning of March.
What is Caleb’s condition?
Caleb was diagnosed with Epileptic Encephalopathy in 2019, which means he has so many seizures that his brain never has chance to recover.
As a result of the condition, Caleb’s brain is underdeveloped and he cannot read, write, or even sleep through the night. The severity of his seizures also means he is at risk of sudden death from epilepsy.
Caleb’s life changed overnight when the seizures began. At first he had around 20 per day and grew to 60 per day.
Caleb has already had two operations by Dr Tomycz, where two parts of his brain were removed, and the results saw a drastic decrease in seizures.
He currently has around 10 seizures everyday, most commonly throughout the night.
- READ MORE: Caleb’s story
The hoped for third surgery will remove another part of Caleb’s brain, in hopes that his seizures will stop almost completely.
Kirsty is grateful to everyone who donated and helped to raise awareness and thanked donors on Instagram: “None of you gave up on Caleb, you donated, shared, told his story, set up fundraisers, sourced raffle prizes, went after the media, and contacted every single solitary person you could think of that may be able to help Caleb.
“You have worked tirelessly, for our baby, and for that we can never thank everyone enough.”
- The GoFundMe page is still live and accepting donations. You can donate here.
