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Mum's plea for son, 5, with incurable neuro condition
16 Oct
Summary
- Five-year-old Bobby diagnosed with rare Sanfilippo Syndrome.
- Condition dubbed 'childhood Alzheimer's' or 'childhood dementia'.
- Mother wishes son to 'experience life as much as he can'.
A Blackpool mother is determined for her five-year-old son to "experience life as much as he can" following his diagnosis of a rare neurodegenerative condition. Bobby has Sanfilippo Syndrome, a progressive illness often referred to as 'childhood Alzheimer's' or 'childhood dementia'.
The condition, specifically Sanfilippo Syndrome Type A (MPS III), leads to the gradual loss of essential abilities like walking and eating. Bobby's diagnosis came after speech and language therapy revealed delays, prompting further hearing examinations. An audiology consultant also noted facial features consistent with the syndrome.
His mother, Sophie, shared that while parents often overlook perceived abnormalities in their children, the diagnosis brought clarity. She works at Blackpool Teaching Hospital Trust.
