A mother has opened up about her grief after her young son lost the ability to talk and walk following a rare diagnosis.
Joey Walton from Wakefield, England, was just three years old when he was diagnosed with metachromatic leukodystrophy, a rare autosomal recessive lysosomal disorder that results in dementia including symptoms like memory loss, difficulty communicating, confusion, and more.
The unforgiving illness, which is commonly known under the acronym MLD, causes the loss of both mental and physical skills and means that Joey will likely not live longer than the age of seven.
According to the boy’s heartbroken parents, Liam and Katie Roebuck, their little son has already lost many skills that he learned as a young toddler. His condition is getting progressively worse and he can no longer talk and walk.
“His legs started to bend and his feet began to turn outwards,” Katie explained as she revealed that treatment was no longer an option after her son’s condition was detected because it had already progressed too far.
Following the shocking diagnosis and grim prognosis, Katie and Liam decided to do the only thing that they can – help their young son make the most of the time he has left.
“We’ve been on day trips out and he especially loved seeing the Gruffalo in Blackpool,” Katie added.
The parents have also begun supporting a campaign aiming to provide all children with free MLD screening after their birth.
While most people with MLD develop the condition after the age of 65, young people and even children can be affected in rare cases.
“I’ve seen patients in their 20s – the youngest was 18,” Dr Hilda Hayo of Dementia UK said.
Our thoughts remain with Liam and Katie during this challenging time.
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