Summary
A young girl named Veda has a rare condition called Sanfilippo syndrome, which affects her ability to talk and perform other activities she once loved. This condition, known as 'childhood dementia,' gradually worsens over time, leading to serious health issues and often an early death. Veda's family learned about the disease through a video and is now working to raise awareness and seek treatment options.
Key Facts
- Veda, a 5-year-old girl, was diagnosed with Sanfilippo syndrome, a rare neurodegenerative disease.
- The syndrome causes the skills children have learned to deteriorate over time.
- Symptoms include communication difficulties, seizures, and movement problems.
- Veda's speech and ability to draw have regressed, leaving her frustrated and often unhappy.
- Sanfilippo syndrome is caused by enzyme deficiencies leading to a buildup of specific molecules.
- Veda's parents noticed she was drinking a lot, sick often, and had a growing appetite before diagnosis.
- The family identified the disease after seeing a video of a girl with similar features.
- There is currently no cure, but Veda's family is raising awareness and funds for research.
