Rachel D.
Rachel D. is 10 years old. She was born with a disease called Metachromatic Leukodystrophy or MLD. As a rare neurological disease, it only affects 1 in every 40,000 people. There are three versions of MLD: late-infantile, juvenile, and adult. Rachel D. had the late-infantile form of MLD.
People who are affected by MLD lack an enzyme in their blood called Arylsulfatase-A, (ARSA). Without this enzyme, sulfatides are NOT broken down and instead build-up in the white matter of the brain and CNS causing destruction of the myelin sheath, or demyelination. Without an intact myelin sheath there is a breakdown in communication between the nerves and the brain. This loss of or miscommunication accounts for the loss of acquired functions, paralysis, blindness, seizures and eventual death seen in MLD.
Rachel D. passed away this week. We look forward to honoring her battle with MLD for many years. Her legacy is a great motivator. She will always be a teamgive hero!



























