Understand
Mum wants five-year-old son with childhood dementia to experience life
Overview
A mother from Blackpool is determined to help her five-year-old son, Bobby, experience life to the fullest after he was diagnosed with MPS Sanfilippo Syndrome, a rare and incurable neurodegenerative condition often referred to as childhood dementia. The condition was discovered following investigations into speech delays and hearing examinations. Family and friends are currently fundraising to provide Bobby with specialist care, equipment, and memorable experiences.
Key points
- Five-year-old Bobby, from Blackpool, was diagnosed with MPS Sanfilippo Syndrome, a rare neurodegenerative condition with no cure.
- The condition, often called childhood dementia or Alzheimer's, leads to the gradual loss of abilities like walking and eating.
- Bobby's diagnosis came after speech delays led to a referral where an audiology consultant noticed indicative facial features.
- The family's main priority is ensuring Bobby gets the most out of life by spending time on activities he enjoys, such as experiencing nature and animals.
- A family friend, Andreas Tzannes-Kastritis, is walking from Brighton to Blackpool to raise funds for Bobby's care, equipment, and experiences.