All 4 Joey: Challenge to raise funds for Wakefield tot with incurable life-limiting MLD brain condition
Luke is currently in training to complete his second challenge to raise funds for three-year-old Joey Roebuck from Horbury Bridge, who suffers from Metachromatic leukodystrophy (MLD), a rare progressive brain disorder, for which there is no cure or eligible treatment for him.
MLD is a life limiting disease and unfortunately life expectancy is between just five and eight years old.
Last October, Luke ran 100km in just over 14 hours and raised £4,000.
Now on with his next challenge, Luke is training to run 44km – more than 27 miles - wearing a 44lb weighted vest.
The theme for the run is all about the number four - for Joey's 4th birthday which is in February 2024.
Luke said: “The money raised will be for any equipment required to assist in the daily activities and comfort for Joey.
"Unfortunately, such equipment can be expensive and often required custom production. So, I want to set my goal for £4,000. Any additional funds will be donated to MLD Support Association.
Luke hopes to complete the run on Saturday, February 24, and as well as raising funds,he is wanted to raise awareness for the heartbreaking disease.
There are currently petitions in place to have MLD added to newborn screening to help other families avoid having to go through what Joey and his parents, Katie Walton and Liam Roebuck, are.
Joey was diagnosed with MLD when he was around 18-months-old.
Katie and Liam noticed that his legs were bending when he stood up and that he was getting weaker when he was crawling.
Taking him for a check-up, 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.
Speaking to the Express earlier this year, 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.”
MLD is a genetic disease and can be treated if caught early.
If MLD had been on the newborn screening test, Joey could have been treated along with so many others.
Katie said: “Joey has always been the funniest little boy and even though he can no longer talk, his sense of humour is so cheeky!
"He’s a typical boy who loves toilet humour. He loves animals, cows being his favourite.
"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.”
To donate to Luke’s fundraising, visit his GoFundMe page here.