Sylvie Meets Michael Franti

July 17, 2017

Sylvie and her twin sister, Uma, are 11 years old. Sylvie has a rare, degenerative and fatal lysosomal storage disorder (Krabbe disease/globoid cell leukodystrophy) that affects the nervous system. Sylvie is a fighter and has thrived despite her disease that claims most of its sufferers before three years of age.  Her mother wrote, “Franti & Spearhead have given us so much joy over the years.  Their music has literally soothed our whole family as we grieve and live with this rare disease. Sylvie loves music, and Michael’s new song “Enjoy Every Second” could not be more appropriate for her and for those of us who love her.”

Last month, Sylvie and her family were able to meet and see Franti and Spearhead in concert, thanks to a DIFTL wish grant.  “Sylvie cannot talk, but she can hear and see; she was giggling all day on Thursday as we retold the story of seeing the show the night before. We watched a ton of his music videos again on Thursday to keep the love flowing. You rock! You make a difference. THANK YOU” Uma says:  “It was awesome!  Please come back to VT soon.”