In Memory of Devon Ray ... Sept. 2, 2005 - April 9, 2008
Devon Ray was born in Eugene with a rare terminal genetic condition called Metachromatic
Leukodystrophy (MLD).
It robbed Devon of his
childhood and took this
healthy, smiling, bright-eyed
little boy through a painful journey ending in his
death at the age of 2 1/1/2.
What is Metachromatic Leukodystrophy?
Metachromatic Leukodystrophy (MLD) is a rare, inherited disease. 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 the rest of the body causing destruction of the myelin sheath (demyelination). Without an intact myelin sheath there is a breakdown in communication between the nerves and the brain resulting in a progressive loss of physical and cognitive skills leading to early death. There is no cure yet, but with increasing research there is hope!
The MLD Foundation is an Oregon-based non-profit 501(c)(3) serving MLD families by facilitating Compassion for families, pursuing Advocacy, influencing Research and increasing Education for metachromatic leukodystrophy in the US and around the globe. Your donation to the MLD Foundation is fully tax deductible. Learn more about the MLD Foundation here.
