adaptive living

We need more adaptive clothing options for my son with Pompe

I’ve been on the hunt for adaptive clothing for years now. My 5-year-old son, Cayden, does fine with regular clothes, but that’s only because we’ve learned how to make it work. Adaptive clothing is something we all enjoy. It makes using his feeding tube much more manageable. Cayden…

Dwayne’s story: Adapting my life to smash Pompe

In 2018, Dwayne Wilson was struggling under the weight of a Pompe diagnosis. Today he is living life to the fullest. Learn how he adjusted his thinking and adapted his life to thrive with Pompe disease.

What’s an IEP, and How Can It Help Children with Pompe Disease?

Children with Pompe disease, like other children with special needs, may benefit from an individualized education plan (IEP; also called an individualized education program). What is an IEP? An IEP, authorized under the federal “Individuals with Disabilities Education Act,” is a plan or program intended to…