AUGUSTA – The disease is extremely rare – and there’s only one known case in Maine. It’s a rare genetic disorder, and those with it aren’t expected to live for more than two years.
Addilyn Davis was diagnosed with Krabbe when she was just six months old. The disease is fatal – but proponents of the bill say it is preventable.
There are three states where it’s currently law. There are nine other states where it’s pending. Families are coming together as you saw today because of how important this is to them
Earlier this week, Kentucky passed a law to add Krabbe to the list of diseases screened at birth.