Jake and Liams Pompe Disease Treatment

Recently both Jake and Liam were diagnosed with a rare disease called Late Onset Pompe Disease. Pompe disease is a rare (estimated at 1 in every 40,000 births), inherited and often fatal disorder that disables the heart and skeletal muscles. It is caused by mutations in a gene that makes an enzyme called acid alpha-glucosidase (GAA). With no current cure, Treatment consists of regular visits with a genetic specialist, a neurologist, a cardiologist, physical therapist and eventually enzyme replacement therapy (which alone is $300,000 a year). Most of the specialist are not local as this disease is so rare. This means lots of traveling with 3 kids, copays and endless hours at doctors offices. Due to the pandemic and being a one salary military family it’s financially draining and we realized we are way in over our head. Anything including prayers help❤️