A man from Gwent is set to run a marathon in memory of his late son.

James Meacham, a resident of Pontllanfraith, will take part in the TCS London Marathon this Sunday (April 26), raising funds for Tŷ Hafan Children’s Hospice, which supported his family during difficult times.

His son Thomas received a medical diagnosis in January 2018. The illness was adrenoleukodystrophy, a rare inherited condition impacting the brain.

He said their son Thomas enjoyed perfect health until reaching the age of nine, when he started exhibiting unusual behavioural changes.

He was diagnosed in January 2018 with an exceptionally rare, inherited brain condition known as adrenoleukodystrophy.

The condition is so obscure that many people have never encountered it, so he describes it as similar to watching a child suffer from motor neurone disease and Alzheimer’s at the same time – the condition is as devastating and ruthless as it sounds.

After the diagnosis, Thomas’s family kept receiving help from Tŷ Hafan until Thomas’s passing in June 2019.

He said the care, empathy, short-term respite stays, and medical support they received was remarkable, and he does not know how they would have coped without the organisation.

They still provide assistance today through counselling sessions and community-based outreach initiatives.

Although he had always hoped to compete in the London Marathon, it was another man called Chris Thomas who inspired him to run in Thomas’s honour this year.

He said training for the London Marathon had been demanding, though nothing compared to what the children and families connected to Tŷ Hafan experience.

As well as completing the race and gathering essential donations, his aim is to raise awareness about Tŷ Hafan by spreading word about this remarkable organisation to as many people as possible on race day.