Metachromatic leukodystrophy (MLD, also called Arylsulfatase A deficiency) is a very rare terminal genetic neuromuscular disease that affects the myelin sheath that protects our nerves.  Myelin can be equated to the insulation covering an electric wire … when it degrades and shorts out the nerves can no longer conduct their messages across the brain and out to the rest of the body.

Over 50% of the MLD cases are in infants ages 18-24 months who usually lose all muscular control over the next year or two and often leave us within 5 or 6 years. There are also  juvenile and adult forms of the disease. Adult onset may not come until a person’s 40’s and usually shows as cognitive declines before motor control declines.