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Dementia, a condition that affects millions, is often associated with the elderly. However, the story of Joey Walton from Wakefield, West Yorkshire, shines a light on a lesser-known facet of the syndrome – rare genetic conditions causing the early onset of the illness. Diagnosed with metachromatic leukodystrophy (MLD) as a baby, Joey's life took a devastating turn.
In this article, we delve into the challenges faced by Joey and his family, the signs of the disease in children, and the urgent need for awareness and support.
What are the first signs of dementia?
Dementia typically brings to mind images of older individuals experiencing memory loss and cognitive decline. However, it can also affect children, albeit in different ways.
In Joey Walton's case, the first signs of MLD emerged as a gradual loss of skills he had developed as a toddler. MLD, a rare genetic disorder, causes fatty substances to accumulate in the nervous system, organs, spinal cord, and brain. This accumulation disrupts the normal functioning of these crucial systems, leading to a decline in both physical and mental abilities.
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Dementia in children: The unfolding tragedy
Joey's journey serves as a poignant example of how rare genetic conditions can strip away a child's abilities and potential.
At the age when most children are learning to walk and talk, Joey was grappling with the effects of MLD. As the disease progressed, he lost the ability to perform tasks that were once second nature. Simple actions like sitting up by himself became impossible, highlighting the devastating impact of MLD on his physical capabilities.
Joey's parents, Katie and Liam Roebuck, have been witnesses to the agonizing decline of their beloved son. In just a span of 12 months, they watched helplessly as Joey's physical and mental skills rapidly deteriorated. The loss of these skills was not just a medical setback; it was a heart-wrenching transformation of their once-vibrant child into someone unrecognizable.
Joey's case underscores the urgent need for early diagnosis and intervention for rare genetic conditions like MLD.
Treatment and awareness
One of the most heartbreaking aspects of Joey's story is that treatment for MLD was not an option due to the late detection of the condition. Earlier diagnosis could have provided Joey with a chance at a better quality of life and increased chances of survival. This highlights the critical role of awareness and early screening for rare genetic conditions.
Joey's parents are championing a campaign advocating for MLD screening at birth for every child, aiming to spare other families from the pain they are enduring.
Young-onset dementia: A growing concern
Joey's case sheds light on young-onset dementia, a significant issue for those under 65. Despite being rare, his situation underscores the need for better understanding and support for young individuals facing unique challenges in areas like vision, language, behavior, and movement. Dr. Hilda Hayo of Dementia UK highlights that even individuals in their early 20s can be affected.
Despite the challenges and heartbreak, Joey's story also reflects the resilience of the human spirit. His parents are determined to make the most of the time they have left with him, creating cherished memories through day trips and experiences that bring joy to their little boy. Their support for the MLD screening campaign speaks to their desire to spare other families from the pain they are enduring.
The story of Joey Walton serves as a poignant reminder of the diverse faces of dementia. His battle against metachromatic leukodystrophy shines a light on the importance of early detection, awareness, and support for rare genetic conditions causing dementia in children.
As we strive to understand and combat the illness in all its forms, Joey's journey remains a symbol of courage and love in the face of unimaginable adversity.
