Welsh teen with one in a 100,000 genetic condition has already undergone 43 operations

A Llandudno schoolboy born with an extremely rare genetic condition has undergone 43 operations in his life so far but refuses to let his medical situation define him. Thomas Pearce, 17, who attends St David’s College, was born with Pfeiffer Syndrome, which affects around one in 100,000 people.

It causes bones in the skull to fuse and has meant months in hospital recovering from dozens of surgeries. Despite this the remarkable teen is an academic high flyer and he wants to study medicine and become a doctor himself.

He is also a keen kickboxer and is a black belt in karate as well as volunteering at a local care home. His achievements saw him awarded the prestigious Lexden Prize for Remarkable Sixth Former, beating dozens entries from other schools from across the UK.

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“I guess that this would either put me off or inspire me and I won't ever let my medical situation define me,” he said.

Despite facing numerous medical challenges and months off school, Thomas has soared academically, achieving outstanding results in his GCSEs, including four grade 9s, five A*s, one A, and a distinction in Additional Maths.

Headmaster of St David’s College Andrew Russell said: “What sets Thomas apart, beyond his scholastic and musical prowess, is his extraordinary journey. Born with a rare condition that has necessitated dozens of facial and cranial surgeries, he has shown an unparalleled strength of character.

“Each surgery brought new challenges, yet he has faced them with courage, determination, and an unwavering spirit. His ability to balance his rigorous academic schedule and intensive music practice, all while undergoing and recovering from these procedures, is nothing short of inspirational.

“Thomas is determined to become a surgeon himself and has already delivered a presentation to hundreds of surgeons in Liverpool.”

He was asked to speak at the European Symposium Paediatric Otorhinolaryngology 2023. He did a PowerPoint presentation to over 100 surgeons on his airway interventions and their impact on him.

Subsequently he was invited to be a guest speaker for the 10th Cleft and Craniofacial course for junior doctors at Alder Hey hospital.

Thomas said: “These presentations led me to being invited onto an NHS panel as a patient representative for children with complex surgical procedures. This has resulted in me being recommended to apply for another NHS patient representative role. I have volunteered at a local group for young adults with communication difficulties, which I could relate to, having had similar challenges when I had a tracheostomy for six years.”

On the award, he added: “It’s an absolute honour to be nominated for this award, but to win it really is incredible.”

He’ll be going to the House of Lords later in the year to receive the award.

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