Porthcawl Parents Shine Spotlight On Son’s Skull Condition

A mum and dad from Wales stepped up to take on a 100-mile challenge to raise awareness of their son’s little-known condition and mark the anniversary of his life-changing surgery, raising over £4,300 for our charity.

Rosie and Gareth Collins, from Porthcawl in South Wales, pulled on their trainers after pledging to walk or run 100 miles throughout April, which marked a year since their two-year-old son, Finn, underwent surgery to correct a condition called Sagittal Craniosynostosis, which affects the development of the skull.

Finn was just one-month-old when parents’ intuition told Rosie and Gareth that something wasn’t quite right. They took Finn to see their health visitor who referred them to their local children’s hospital unit and eventually, he received an appointment and underwent a CT scan. It confirmed Finn’s diagnosis and doctors explained that it meant the bones in his skull had fused prematurely, affecting the shape of his head and leaving little room for his brain to grow and develop.

Though they’d never even heard of the condition, Rosie and Gareth understood needed specialised surgery and agreed for him to be referred to Birmingham Children’s Hospital’s specialist craniofacial team. A few months later, the family visited Birmingham Children’s Hospital for the first time and Finn was added to the waiting list for his operation.

After a few setbacks, in April 2024 Finn’s operation finally went ahead and specialist surgeons successfully opened up his skull before piecing it back together like a jigsaw, creating more space for his brain and to allow his skull to continue growing as he does. Finn made a speedy recovery and just four days after his operation, he was back to his usual playful self and had been discharged. With no further surgeries needed or expected, Finn would only have to return to Birmingham for check-ups every two years.

Grateful for Finn’s expert care and remembering how daunting and lonely it felt as parents dealing with a rare diagnosis, Rosie and Gareth set upon their two-pronged mission. Rosie said: “First of all we wanted to give back for the incredible care and treatment Birmingham Children’s Hospital give Finn. But we also vividly remember how difficult it was to be told Finn had a condition we’d never heard of and that our local hospital could provide limited information for. We were so grateful of the help and support we received when we got to Birmingham so we wanted to do something that would raise awareness of Craniosynostosis as well as raise money to give back.”

Rosie and Gareth came up with their 100-mile challenge – something achievable but challenging enough to gain them enough support from family and friends. The couple created an online fundraising page, posted Finn’s story and shared it with as many people as they could, hoping to raise at least £500 for the hospital.

Rosie continued: “The hardest part of our challenge was finding the time to complete our miles around busy family life, but we were determined to make it work and took Finn and his big brother, Jude, along on a couple of hikes on holiday.

“We were blown away by how supportive everyone was and couldn’t quite believe we managed to raise so much so we’d like to thank everyone who donated and shared in Finn’s journey.”

Annie Eytle, Head of Public Fundraising at Birmingham Children’s Hospital Charity, said: “Not only have Rosie and Gareth helped to raise awareness for a little-known condition by sharing Finn’s story, by taking on their 100-mile challenge they raised a phenomenal amount which will go on to help us continue supporting brave patients and families just like theirs. We’re so grateful!”