Twenty-nine-year old Tom Martin lives in Cardiff and was first referred to Tŷ Hafan in 2002 at the age of nine. An avid Cardiff City fan, a member of the Welsh National Boccia Squad and BC4 Welsh National Champion, Tom lives with a rare neuromuscular condition with an uncertain prognosis – Intermediate Non Kinesigenic Paroxysmal Dystonic Choreoathetosis. This leaves Tom having to deal with constant and debilitating muscle spasms.
Mum, Deb, said: “Tom is a remarkable young man and an inspiration to us. He has never let his condition get in the way of achieving anything. He and dad Phil are both avid Cardiff City fans. They have been season ticket holders for years and go to all the home games.
“When he was born, as far as we were aware, everything was OK but when he had his six-week check the GP was concerned that his head circumference was larger than it should be. We were seen at the University Hospital of Wales within 24 hours and told that Tomas had hydrocephalus.
“At eight weeks old, he had to have a device called a shunt fitted to relieve the pressure that had built up. That was the first of many shunts.”
Deb continued: “Tomas seemed to be developing properly and was on his feet by about 18 months but then around the age of two, he started showing some signs that all was not quite right. He had started to have spasms for no reason at all.
“He had many different tests. The hospital consultant was certain Tomas was showing signs of suffering from a neuro muscular movement disorder called Intermediate Non Kinesigenic Paroxysmal Dystonic Choreoathetosis, and that this was causing the muscular spasms Tomas was suffering with daily.
“We have tried several different treatments to help Tomas with these spasms, that can happen anytime day or night. He’s had many different scans and several investigations at Great Ormond Street Hospital, plus a long list of medication over the years.
“He has needed spinal rods due to scoliosis, has had hip surgery to correct a dislocation, but the most difficult and serious was pioneering brain surgery to have an electronic device fitted called a deep brain stimulator, which was done at Frenchay Hospital, Bristol.
“But Tom is a determined young man who not only has a love of sport, but he also loves comedy, has a wicked sense of humour and fantastic personality that we all love. He likes to keep up with the trends, he is and always will be an inspiration to us as a family.”
Tom, who graduated from the University of South Wales in 2022 with a BSc in Sports Coaching and Development now works as Boccia Coordinator for Disability Sport Wales. He is also a member of Tŷ Hafan’s The Squad – a group of young people who, thanks to advances in medicine and excellent care, have lived into adulthood.
Says Tom: “The sky is the limit if you only limit yourself to the sky!”
Tom is still very involved with Tŷ Hafan and has not only fundraised for the hospice but has recently started to deliver some Boccia sessions for children supported by Tŷ Hafan.