A family from Cardiff is seeking donations towards their son’s life saving surgery
WHILE parents in Cardiff are putting up Christmas trees, writing lists, and thinking about what to buy for Christmas dinner, one couple is concentrating on raising enough money to send their eight-year-old son for lifesaving surgery in the USA.
Caleb McCarthy’s life changed overnight in August 2019 when his life-threatening seizures began. They started at about 20 per day and worsened to 60.
Caleb was diagnosed with Epileptic Encephalopathy which means he has so many seizures a day that his brain never has chance to recover from the last one. The disease is resistant to medication.
Since the diagnosis, Dr Luke Tomycz of New Jersey in the US has performed two operations to remove two parts of Caleb’s brain.
These surgeries initially reduced his seizures to around one every 10 days but this has gone up to about 10 per day, and Caleb is at risk of sudden death from epilepsy.
Caleb rarely attends school, and he is not able to read or write. “At the very most he can trace over his name in pencil on a good day”, said his mother, Kirsty Rosser.
To protect him in the night, Kirsty shares a bed with both Caleb and his four-year-old brother, Cameron, and hasn’t slept properly in over four years.
The condition affects the entire family. Caleb needs constant care so Kirsty and her partner Stewart McCarthy have reduced their working hours to be there for him.
Four-year-old brother Cameron’s life has also been affected in many ways.
“I think Cameron has some sort of separation anxiety. Unfortunately because [seizures] happen so often, we can’t stop Cameron from seeing them, he has got used to it, but I do worry how that impacts him. He does have emotional outbursts at times because he just has so much on his little four-year-old brain,” said Kirsty.
Cameron’s desire for a normal brotherly relationship becomes more apparent at Christmas time.
“Christmas is a funny one because Cameron gets up at the crack of dawn and then Caleb is not always able to do that. With his seizures mostly being at night we have to let him lie in otherwise they get worse throughout the day.
“It is really hard to stop an excited Cameron from waking Caleb up. Cameron understands but at times like Christmas he does think ‘why?’ and it isn’t fair,” said Kirsty.
There is hope Caleb will become free from seizures if the family can raise enough money to go back to the USA where he would have another area of his brain removed.
The family need to raise £120,000 before they can visit “Dr Luke” again so the family have set up a GoFundMe page which you can donate to.
They have raised almost £27,500 since setting up the fundraiser on November 10.
Other ways to get involved include the children’s Santa Spectacular Show event at Llanishen High School on Saturday, December 9. To buy tickets, email sjb_media@outlook.com. All profits will be donated to Caleb’s treatment.
There is also a raffle at an adult fundraiser on January 5. For details and to buy tickets follow @caleb_orion_2015 on Instagram from Friday. Organisers are also looking for raffle prizes.
