Wakefield toddler with incurable life-limiting MLD brain condition celebrates his third birthday

The youngster, from Horbury Bridge, celebrated his big day at his home surrounded by his family at the weekend.

Joey was diagnosed with metachromatic leukodystrophy (MLD) when he was around 18-months-old after his mum, Katie Walton, and dad, Liam Roebuck, noticed that his legs were bending when he stood up.

They also started to notice that Joey was getting weaker when he was crawling and so took him to the doctors for a check-up, not thinking it would be “anything serious”.

An MRI later discovered that he had ‘white matter’ on his brain, which, according to the NHS, causes a progressive loss of physical and, later, mental skills.

His mum Katie said: “It is a progressive disease which will slowly kill off his nerves. He can’t speak anymore – before he would not stop speaking, he was a right chatterbox – and he now has no body strength.

"He has a stomach feeding tube and we’ve been told his life expectancy is around five-years-old.

"I want to raise awareness of the condition, even if it is just locally. Campaigners are looking for the MLD screening to be added to the newborn heel prick test so that no child will have to go through what Joey is going through.

“It is horrendous, it is the cruellest thing I’ve ever seen and no parent should ever have to go through it.”

It is estimated that the condition affects around one in 40,000 children but the risk is higher if both parents are carriers of the faulty genes that cause the disorder.

There is no treatment to cure Joey, but last month, a one and a half-year-old girl became the first child in the UK to receive a life-saving gene therapy treatment that corrects the underlying genetic fault that causes MLD.

The drug, which is sold as Libmeldy, is Europe’s most expensive drug at the list price of £2.8m but it can only be administered to children whose condition has not progressed too far.

To donate to Joey’s fundraiser for home equipment, visit: https://www.gofundme.com/f/joeys-metachromatic-leukodystrophy-battle?utm_campaign=p_cp%20share-sheet&utm_content=undefined&utm_medium=copy_link_all&utm_source=customer&utm_term=undefined&fbclid=IwAR1Ce9VQlZh2TJgiEVooeNELvnrgTpFx0iNPnijHImDydIGJN8R4s6rG_S8