Investigating the cause of my son’s recent weight loss

Weight gain is something my 6-year-old son, Cayden, has struggled with his whole life. He had difficulty eating as a newborn because of his weak sucking and swallowing muscles — a direct result of his infantile-onset Pompe disease. When he was a month old, his medical team decided it…

Spoon Theory for Late-onset Pompe Disease Patients

If you have late-onset Pompe disease, you’re likely dealing with muscle weakness, aches, and cramps, and possibly headaches and fatigue. Many people may not understand how overwhelming all this can be, and it may not always be easy to explain. However, an analogy called the spoon theory can help…