My nephew, Daniel, is 5 years old and attends kindergarten. He enjoys playing with Superheroes, legos and cars, as well as video games and "wrestling" with his dad. He also has nemaline myopathy (NM), a neuromuscular disorder that causes muscle weakness. NM makes walking, eating, coughing and breathing difficult.
Daniel gets around in a variety of ways, including a wheelchair, tricycle and walker. He can also walk independently for a few steps. He is fed through a g-tube and uses a machine that helps him cough. At night, he uses BiPap while he sleeps. He has severe scoliosis that requires him to wear a back brace. Despite all of this, Daniel is cheerful and good natured, loves to learn and make friends, and is always making his family laugh.
Daniel has started asking his parents hard questions, such as, "When will I get out of nemaline myopathy?" He has also asked, "When I'm a dad, will I still have nemaline myopathy?" As my brother and sister-in-law answer these hard questions, it gives them hope to be able to tell their 5-year-old son that researchers are working hard to find treatments to help him and future generations.
Arturo and I would be so grateful if you'd consider donating to A Foundation Building Strength for Nemaline Myopathy.