No parent can imagine being told their child is going to die.

But just after Christmas 2017, that nightmare became reality for project manager James Meacham when he was told his son had been diagnosed with a rare brain disorder.

Little Thomas was just eight years old when he was diagnosed with Adrenoleukodystrophy (ALD), a rare and inherited disorder which affects the adrenal glands and white matter of the brain.

Thomas with his little sister, Ella

The condition causes a progressive loss of physical and mental skills.

Only boys can get ALD, with one in every 20,000 males affected.

There is no effective treatment and eventually, the combination of a diseased brain and physical weakness leads to death.

The diagnosis left James and wife Sarah devastated, feeling a sense of loss as their active little boy who loved nothing more than doing karate, rock climbing with his father and walking his pet Labrador, Lola, changed in front of them.

Thomas loved to rock climb with his father

"Just over a year ago, Thomas was a normal eight-year-old," James, from Pontllanfraith, near Blackwood, said.

"But after Christmas, he had two seizures and was taken to hospital, then transferred from the Royal Gwent to the University Hospital of Wales.

"It was there where the ALD diagnosis was made.

"Since then, he's been in rapid decline from an able-bodied child who would go climbing with me in the holidays to a near vegetative state, completely dependent on us and carers.

"It's been incredibly hard.

"I feel so hopeless. You can't do anything about it.

"He was just a normal, outgoing, intelligent boy who loved animals.

"It's so crazy to think back how he was and how he would be."

He also loved to walk his dog Lola

Looking back, James remembers the day he was told Thomas' condition was terminal very clearly.

"We kind of prepared ourselves it wasn't going to be good news," he said.

"There were so many tests and procedures.

"We knew it would be something serious but when they took us into the family room, it was life-changing.

"We didn't really know how to deal with it.

"Then you have to go back into the ward and try and keep things normal."

Now Thomas is in a near vegetative state

Now little Thomas spends some of his time in hospices, such as Ty Hafan in the Vale of Glamorgan.

For James, it's brought a support network he might not have known how to find.

"When it becomes end of life, he'll be in Ty Hafan until the inevitable happens," he said.

"When he's well, he goes to school in Ystrad Mynach.

"The care and support we get from Ty Hafan even if you're not there is incredible. They're at the end of the phone if you need them.

"They're incredibly supportive.

"I don't know where we would be without them.

"It feels like part of a club you don't want to be in. Friends and family can't emphasise with how you're feeling, having a terminally ill child. But meeting other parents, you feel it's like a comfort blanket."

Dad James is now taking part in a challenge for charity

Now James is taking part in a challenge to help raise money for the hospice who has helped his family over the last year.

He's taking part in a 320-mile trek cycling from Cardiff to Paris as they 'Ride to the Rugby'.

Starting on January 29 at the Principality Stadium, the cyclists will travel around 80 miles per day, before hopefully reaching the Stade de France on February 1 for the France v Wales game, but for James, it's going to be a tough event.

"We're going to be up against it with the weather," he said.

"I'm doing it with almost 50 other people but I'm the only parent doing it.

"I'm really looking forward to it. We started training a few months ago.

"I've always been into general fitness, but not cycling.

"So far I've raised over £2,500 but I hope to raise £3,000, which goes to Ty Hafan.

"I'm doing it because of the support they've given to me and my family."

To donate to James' online fundraising page, click here.