All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…
parenting
One of the hardest things about being a special needs parent is all of the unknowns. Not knowing what tomorrow will look like makes planning things a bit difficult. I am someone who likes to have plans set in stone. However, I’ve had to adjust,…
Recent Posts
- Using approved LOPD combination therapy at home is safe, study finds
- How a Pompe disease diagnosis both tested and transformed our marriage
- New Phase 2 trial tests oral add-on therapy for late-onset Pompe disease
- My journey of learning how to explain Pompe disease to others
- Early trial of late-onset Pompe disease drug yields positive results