Despite all their challenges, the family received a grant from Donald Trump to turn their garage into a well-equipped bedroom for Sean and have taken him on many adventures (Sean, not Donald); including Disneyland Paris and even canoe trips!
Sam is passionate about parents being empowered to obtain the very best care and quality of life for Pompe infants, and he will work with the Pompe Support Network to make sure that we don't forget that very important section of our community.
