Our son Carson was born in April 2024. During his newborn check, a defect was noticed in his left foot. We were initially told it was positional and muscular and would improve with time and physiotherapy. However, by 11 months old there had been no change, so we sought further investigations.

After X-rays and ultrasounds, doctors discovered that part of Carson’s fibula was missing and his tibia was bowed. He was referred to orthopaedic specialists, who initially believed he had Fibular Hemimelia, although there was uncertainty as it could also be Congenital Pseudoarthrosis (CPT). His case was reviewed by specialists around the world, but no definitive diagnosis could be made.

On 18th June 2025, Carson woke up screaming in pain.

We rushed him to A&E where we received the devastating news that his original diagnosis was incorrect and that he had CPT. His leg had suffered an impending fracture, a common complication of this rare condition. Carson was transferred to Sheffield Children’s Hospital, where we were told his leg would not heal without complex surgery and that he would likely require multiple operations throughout his life.

For the next 11 months, Carson lived with a broken leg, wearing an AFO splint 24 hours a day and unable to walk. Despite this, he adapted remarkably, finding his own ways to move around by crawling, shuffling and knee-walking.

Throughout countless appointments, scans, blood tests an MRI and now being registered disabled and currently needing a wheelchair, his bravery never failed to amaze us.

Alongside CPT, Carson has also been undergoing testing for Neurofibromatosis Type 1 (NF1), a condition that can affect bone healing, the brain, eyes and skin. We are currently awaiting further genetic testing results.

On 18th June 2026, exactly one year after his fracture, Carson underwent major limb reconstruction surgery at Sheffield Children’s Hospital. The operation lasted over five hours and included removal of diseased bone and a bone graft. He is now recovering at home.

CPT affects an estimated 0.0004–0.0007% of the world’s population, making it an incredibly rare condition.

The past year has been one of the hardest our family has ever faced, but Carson has shown extraordinary courage, resilience and determination throughout.

We are incredibly grateful to the team at Sheffield Children’s Hospital and to all our family and friends for their support.

To honour Carson’s journey, we will be taking part in several fundraising events over the coming months, including The Otley Run and Tough Mudder.

We are raising money for two charities that have supported Carson’s journey:

Any donation, no matter how big or small, would mean the world to us.

Thank you for taking the time to read Carson’s story. – Visit Carson’s GoFundMe appeal here.

Love,
The Lees Family x