Pinderfields Hospital to light up in blue in September in aid of little Joey and others who have leukodystrophy

As part of Leukodystrophy Awareness Month, buildings up and down the UK will turn blue to spread awareness of the condition.

In Wakefield, Pinderfields will don the colour on behalf of three-year-old Joey Roebuck, from Horbury Bridge, who has metachromatic leukodystrophy (MLD), the most common type of leukodystrophy.

Joey was diagnosed with the condition 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.

The brave tot’s mum, Katie, said: “Joey was born a happy healthy little boy, He reached all his milestones the same as all the other children his age. Until he was around 16-months-old, he just wasn’t managing to walk unaided.

"He could walk along the sofa and hold onto things but never independently. My health visitor told me not to worry as so many children don’t walk at this age and that the GP doesn’t review them until they are at least 18-months-old and told me to wait, so that’s what I did.

"Being a first time mum I didn’t want to go against professionals.. but I have learned that no one knows your child better than you, and if something doesn’t feel right then listen to your instincts.”

The majority of leukodystrophies are degenerative and cases a wide array of symptoms including impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills.

In Joey’s case, and others, the condition it is life limiting, with most children with late infantile MLD usually only living to age five.

But it can be treated if caught early, and if MLD had been on the newborn screening test, Joey could have been treated along with so many other sufferers.

Katie said: “Joey is my only child and knowing I will lose him to this horrible disease is unimaginable, the one thing I can do is raise awareness and hope that everything he has had to endure isn’t for nothing.

"My hope is one day we can change the future and there is no more MLD. What I would do for things to be different for Joey and I will forever feel helpless. Newborn screening can stop any more children being ‘too late’ for treatment.”

Leukodystrophy Awareness Month runs throughout September. A supporter of the month is Alex the Leukodystrophy Charity, which was set up in 2004 by single mum, Sarah Hunt, of two sons diagnosed with MLD.

It is the only dedicated charity in the UK that helps support individuals and their families diagnosed with the condition.

For more information visit: https://alextlc.org/who-we-are/