I Thought My Son Had Autism—the Truth Was So Much Worse
Summary
A mother shares her experience of her son Merrick, who was first diagnosed with autism and ADHD but later found to have Sanfilippo syndrome, a rare genetic disease that causes progressive loss of abilities. The diagnosis gave an explanation for his regression and challenges but also brought difficult realities and limited treatment options.Key Facts
- Merrick was diagnosed with autism and ADHD around age four and a half.
- He showed signs of being smart but had trouble communicating and learning as expected.
- Around age five, Merrick’s skills began to regress, losing abilities in language, motor skills, and focus.
- The COVID-19 pandemic disrupted routines and support, which complicated the family’s efforts to help him.
- In June 2024, Merrick was diagnosed with Sanfilippo syndrome, a rare genetic disorder causing progressive loss of mental and physical abilities.
- Sanfilippo syndrome is often described as a form of childhood dementia and has no known cure.
- By the time of diagnosis, Merrick was too old to qualify for clinical trials that might have helped.
- Merrick currently needs constant support, including a one-on-one aide at school and ongoing specialist care.
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