The Evanoskys have three children—John, Christopher and Jack—who were diagnosed with late infantile metachromatic leukodystrophy (MLD) in January 2005. MLD is a rare, genetic, degenerative, neurometabolic disorder that affects approximately one in 40,000 people (primarily children) worldwide. It is an inherited disease, but parents are typically not affected.
Jack received an unrelated umbilical cord stem cell transplant in April 2005. John participated in a clinical trial in 2009 where he received stem cells from his father; Christopher participated in a similar trial in 2011.
John passed away on December 27, 2016 at the age of 15. Christopher and Jack continue to thrive and are currently in high school.
The Evanosky Foundation supports pediatric leukodystrophy research, universal newborn screening, and children and families affected by a leukodystrophy, lysosomal storage disorders, or other disabling pediatric conditions.
At present, it is a disease for which there is no cure, but we are actively fighting it on a number of fronts: