James Meacham, from Pontllanfraith, will take on the TCS London Marathon this Sunday (April 26), in support of Tŷ Hafan Children’s Hospice, which supported his family.
Mr Meacham’s son Thomas was diagnosed in January 2018 with adrenoleukodystrophy, a rare genetic brain condition.
He said: “Our son Thomas was fit and well until the age of nine, until he started showing signs which were out of character for him.
“He was diagnosed in January 2018 with a very rare, genetic brain condition called adrenoleukodystrophy.
“It’s so rare, hardly anyone has heard of it so I describe it as watching a child have motor neurone disease and Alzheimer’s – it’s as awful and cruel as it sounds.”
After his diagnosis, the family received ongoing support from Tŷ Hafan until Thomas died in June 2019.
Mr Meacham said: “The care, compassion, respite stays, medical support we received was incredible and I don’t know how we’d have coped without them.
“They support us even now with counselling and outreach services.”
Although he had always wanted to take part in the London Marathon, it was fellow father Chris Thomas who inspired him to run in memory of Thomas this year.
Mr Meacham said: “Training for the London Marathon has been hard but nothing compared to what the children and families of Tŷ Hafan go through.
“Apart from completing the marathon and raising essential funds, I’m hoping to spread the word about Tŷ Hafan by telling as many people on the day as I can about this amazing place!”
