Advocacy for Change: Parents Support Campaign to Prevent Tragic Cases of Early-Onset Dementia

Advocacy for Change: Parents Support Campaign to Prevent Tragic Cases of Early-Onset Dementia


In a poignant revelation, a mother opens up about her three-year-old son’s agonizing struggle with dementia.

Joey Walton, a resident of Wakefield, West Yorkshire, has been grappling with metachromatic leukodystrophy (MLD), an uncommon genetic ailment responsible for the accumulation of fatty substances in the brain, spinal cord, nerves, and organs.

This distressing condition results in the gradual erosion of both physical and cognitive abilities, leaving Joey’s life expectancy at a mere seven years.

Formerly able to walk and talk, Joey’s toddler achievements have dwindled due to MLD’s merciless progression.

Parents’ Heartache and a Rapid Decline

Katie and Liam Roebuck, Joey’s devastated parents, share their heartache and the profound deterioration they’ve witnessed in their son’s condition over the past year.


Katie, aged 35, recalls the heart-wrenching moment when Joey’s promising development ceased, prompting her to seek medical guidance.

The progression of MLD became evident as Joey’s legs contorted and his feet turned outward within two months.

Joey’s inability to maintain an upright position led his parents to consult a physiotherapist, who swiftly detected the distressing downturn in his health.

Regrettably, due to the late diagnosis of Joey’s MLD, treatment options are inaccessible, as they would have been more efficacious if administered earlier.

Cherishing Moments and Advocating for Change

Despite the grim circumstances, Katie and Liam are determined to maximize the time they have left with Joey.


The family has embarked on memorable outings, including a cherished encounter with the Gruffalo in Blackpool.

Additionally, they are ardently supporting a campaign advocating for mandatory MLD screening at birth for every child.

Understanding Metachromatic Leukodystrophy (MLD)

Metachromatic Leukodystrophy (MLD) is a rare genetic disorder that affects roughly one in 40,000 individuals, primarily children, across the globe.

This degenerative neurometabolic ailment leads to the accumulation of harmful fatty substances called sulfatides due to a deficiency in the arylsulfatase-A enzyme.

As these substances accumulate, the protective myelin covering on nerve fibers deteriorates, disrupting communication between nerves and the brain.


MLD manifests in several forms, including late infantile, early juvenile, late juvenile, and adult, each with distinct age ranges and symptom profiles.

A Heartfelt Call to Action

In light of Joey’s tragic case, the importance of the campaign supporting MLD screening becomes even more evident.

By advocating for widespread screening, families could be spared the anguish of losing a child prematurely.

This heartfelt plea coincides with recent research by Dementia UK, revealing that a considerable number of individuals under 65 suffer from young-onset dementia.

Although dementia is commonly associated with older age, it can afflict younger individuals, leading to a range of symptoms, including memory loss, confusion, and challenges with language and problem-solving skills.


Dr. Hilda Hayo, CEO of Dementia UK, emphasizes that dementia can affect people as young as their 20s, with distinct forms of the disease emerging in younger patients.

These forms often encompass non-memory skills like changes in vision, language, behavior, or movement problems.

The distressing story of Joey Walton serves as a poignant reminder of the need for awareness, early intervention, and support for those facing debilitating conditions.

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