Description
Support SBSK and help us continue sharing stories like this: https://patreon.com/sbsk
Lottie was diagnosed with Down syndrome before she was born. Then at 4 years old, she was diagnosed with Sanfilippo syndrome, a rare genetic disorder often referred to as childhood dementia. Sanfilippo syndrome causes progressive damage to the brain and body, leading to a loss of skills and abilities over time. For families affected by this condition, time becomes incredibly precious.
Although potential treatments for Sanfilippo are currently being studied in clinical trials, Lottie is not eligible to participate because of her dual diagnosis of Down syndrome and Sanfilippo syndrome.
By sharing Lottie’s story, her family hopes to raise awareness about Sanfilippo syndrome and help create a future where children with dual diagnoses are given access to potentially life-changing treatments.