Welcome to my Muscle Walk Personal Fundraising page!
Meet Jesse! He is 7yrs old. Jesse is very loving, compassionate, pleasing, generous, brave, and witty. Jesse enjoys playing outside riding his bike, scooter, and skateboard with his friends and siblings. He enjoys swimming in the summer, and loves to play video games. Jesse is a fighter. Jesse is unique. And Jesse is rare. Jesse has Juvenile Pompe Disease, a rare form of Muscular Dystrophy. You would never know by looking at Jesse that he battles challenges every day in everything he does. Pompe Disease is a life-long neuromuscular disease that affects all muscles of the body causing progressive muscle weakness as a result of glycogen storage build-up due to GAA (acid alpha-glucosidase) deficiency. There are two forms of Pompe Disease; Infantile (early onset) and Adult (late onset). Jesse has a combined form of Pompe being affected by both infantile and adult genetic mutations. There is no cure for Pompe Disease. Fortunately there is treatment. Enzyme Replacement Therapy (ERT) has shown to decrease heart size, maintain normal heart function, improve muscle function, tone, and strength, and reduce glycogen build-up. Jesse receives treatment every 2 weeks through a 4hr I.V. infusion to fight against Pompe. Treatment is life-long to slow the progression of the disease, in hopes that a cure is discovered soon. Please join us, and or donate, as we gather together to help Jesse, and others, fight against Pompe Disease and other types of Muscular Dystrophies.
Help Jesse cross the Muscle Walk finish line and FINISH STRONG! Join us, April 6, 2014, 11am-3pm, at Bethlehem Steel at Arts Quest, for the Muscle Walk and we’ll have a great time for a great cause. Better yet, make a donation today, and help us reach our fundraising goal to help support the families who depend on MDA. Together, we grow stronger.
Make a Muscle. Make a Difference.®
Aunt Julie & Uncle Tommy
De Selm Family
Mrs. Lara Walker