A boy who was diagnosed with aggressive brain cancer when he was just 11 days old has reached a milestone his parents feared they might never see as he starts school.
At the start of Childhood Cancer Awareness Month, Joey Sharp’s family is sharing his story of hope as they join Brain Tumour Research in calling for greater national investment in research into this devastating disease.
Joey had only been home for a week when he was taken back into hospital in December 2020. He had been struggling to feed, was losing weight and suffering jaundice that was not improving. Doctors noticed what looked like a tiny infection in one of Joey's fingernails and he was admitted to the Royal Hospital for Children in Edinburgh for intravenous antibiotics.
During his first night there, Joey started experiencing tiny twitches and an ultrasound revealed what doctors initially believe could be a bleed or tumour in his brain. Within hours, he’d had a CT and MRI scan, and his parents, Sam and Steven, were told Joey needed emergency brain surgery that day, or he was unlikely to survive.
Analysis of tumour samples taken during surgery revealed the tumour was a glioblastoma – an aggressive brain cancer that usually affects adults.
Sam said: “Steven and I were completely devastated. Although the surgery had removed the immediate danger, we suddenly found ourselves facing a diagnosis that carried so much uncertainty and fear.”
Joey and Sam in hospital
Over the next few years, Joey had a further three brain surgeries and around nine rounds of chemotherapy. He was also able to participate in clinical trials in Scotland, undergoing additional blood tests which helped researchers better understand chemotherapy treatment in babies.
Thankfully, towards the end of his treatment, the family received the news they had desperately hoped for. As Joey was receiving his final chemotherapy, his parents were told his latest scan revealed no evidence of disease.
Sam said: “We'd been preparing ourselves to hear that he would probably need more surgery after chemotherapy, so hearing those words was overwhelming. For the first time in months, we felt like we could finally breathe again.”
Today, despite living with cerebral palsy and the lasting effects of his treatment, Joey is a happy, determined five-year-old who “fills every room with laughter and never lets anything hold him back”. And he’s just reached another milestone his parents once feared they might never see – starting school.
“Watching Joey walk through those school gates was incredibly emotional, not just for our family but for the many doctors, nurses and therapists who have supported him since he was only 11 days old,” Sam said. “He approaches life with so much determination and happiness. The bond he now shares with his sister, Carly, and brother, Robbie, is incredible.”
Joey and his family
One in three children who die of cancer in the UK is killed by a brain tumour. Survival rates have only improved by 5% since 1997 and there has only been one new treatment for childhood brain tumours approved since 2000. Yet, investment into research remains critically low.
Spurred on by Joey’s experience and knowing how desperately families affected by brain tumours need hope, Sam is supporting our calls on the Government to increase investment into research to at least £45 million a year by 2029.
And next year, she’ll take on the Edinburgh Marathon to raise funds for Brain Tumour Research. She said: “Whenever training gets difficult and I want to stop, I think about Joey and everything he has already overcome. His courage motivates me to keep putting one foot in front of the other.
“More research means better treatments and, ultimately, more families getting the chance to watch their children grow up.”
To find out how you can get involved and help us find kinder treatments and, ultimately, cures for paediatric brain tumours, visit our Childhood Cancer Awareness Month page.
Related reading:
