A heartbroken mother has shared the tragic story of her three-year-old son’s battle with dementia. Joey Walton, from Wakefield, West Yorkshire, was diagnosed with a rare genetic condition called metachromatic leukodystrophy (MLD) as a baby. This condition causes fatty substances to build up in the nerves, organs, spinal cord, and brain, resulting in the loss of both physical and mental skills. Sadly, Joey’s condition is so severe that it is unlikely he will live past the age of seven. He has already lost the ability to walk and talk, skills he had developed as a toddler.
In an interview with The Sun, Joey’s parents, Katie and Liam Roebuck, shared the devastating decline they have witnessed in their son’s health over the past year. Katie described the moment when Joey stopped making progress and reached out to his health visitor for help. Within two months, Joey’s legs began to bend, and his feet turned outwards. Concerned, Liam and Katie took Joey to see a physiotherapist who confirmed their fears when Joey could no longer sit up by himself. Unfortunately, treatment is not an option for Joey because his MLD was detected too late. Early diagnosis can increase chances of survival.
Despite facing such adversity, Katie and Liam are determined to make the best of the time they have left with Joey. They have created special memories by taking him on day trips, with his favorite being a visit to see the Gruffalo in Blackpool. Additionally, the parents are supporting a campaign advocating for MLD screening at birth for all children.
Metachromatic Leukodystrophy (MLD) is a rare genetic disorder that affects approximately one in 40,000 people, predominantly children. It is an inherited disease that causes a deficiency in the arylsulfatase-A enzyme responsible for breaking down fatty substances called sulfatides. As a result, these substances accumulate in the body, leading to the destruction of myelin. MLD manifests in several forms, including late infantile, early juvenile, late juvenile, and adult. While there is currently no cure for MLD, bone marrow and stem cell transplants have shown success in slowing or stopping the progression of the disease.
The devastating case of Joey highlights the urgent need for awareness and early detection of MLD. His parents believe that supporting the campaign for MLD screening at birth can prevent other families from experiencing the agony of losing a young child. This heartbreaking story comes at a time when research reveals that a significant number of people under 65 are classified as having young-onset dementia. Although dementia is more commonly associated with older individuals, it can also affect younger people, leading to symptoms such as memory loss, confusion, and language difficulties.
Dr. Hilda Hayo, CEO of Dementia UK, emphasizes that younger individuals tend to develop rarer forms of dementia, and their symptoms often extend beyond memory loss to include changes in vision, language, behavior, or movement problems. The importance of raising awareness and supporting individuals with dementia, regardless of age, cannot be understated.
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