Metachromatic Leukodystrophy (MLD)

A lot has happened over the past few weeks.  Darlene and Laura attended a medical symposium on leukodystrophies, sponsored by Hunter's Hope and held in Bufflo, NY.  Hunter's Hope is  a wonderful organization founded by Jim Kelly (the Hall of Fame quarterback for the Buffalo Bills) and his family after the passing of their son Hunter. They support medical research and reach out to help and encourage individuals and families that are effected by Krabbe disease or other leukodystrophies.   

This was a tremendous experience for all.  Laura was ready & excited to, in her own words, state: " Hi I'm Laura and I have MLD".  The 5 day conference also included lots of fun and games as well as a raffle for an autographed football by Jim Kelly - which Laura won.  Jim signed it "To Sweet Sweet Laura".

Another great experience occured on Monday, 8/13/12.  Darlene, Laura, and Emily visited The Wellness House in Annapolis which provides respite care and services to individuals and families who experience significant medical issues and their aftermath. This has provided a very valuable and deeply appreciated component to our healing journey.  They've gone to this facility over the past 9 months ans sometimes their visits  match up with the days that a local musician, Bob Sima, performs in a small intimate setting.