BOB FM has teamed up the owners of Life of Riley Resort, Josh and Jessica Gillson, to offer this exclusive vacation as a way to raise funds for the newly founded nonprofit, George’s Pompe Pals.
Josh and Jessica’s son George was born with a form of Muscular Dystrophy (MD) called Pompe Disease. Pompe disease is a rare genetic condition that causes muscle weakness that gets worse over time. It can have a serious effect on many of the body’s systems. Pompe disease happens because of a mutation in a gene that helps make an enzyme called acid alpha-glucosidase. This enzyme breaks down a type of glucose called glycogen . When the enzyme is not made properly, glycogen builds up in the body’s cells. This stops the cells – especially those in the body’s muscles, including the heart – from working as they should.
In the past, many infants with Pompe disease lived only into early childhood. But today those odds are improving. Enzyme replacement therapy can extend the lives of babies with infantile-onset Pompe disease. It also helps people with late-onset disease. Getting care from a team of medical specialists helps many children with Pompe disease live well into adulthood.
The Gillson family is currently setting up a nonprofit called George’s Pompe Pals to assist other families with children similar to George that are struggling getting their child to life saving treatments.
Learn more and book your cabin here.
