Powering Through Pompe – a Column by Keara Engle

Keara is located in south-central Pennsylvania and has lived there her whole life. Keara is a single mother to a little boy with Pompe disease who was born in 2018. She hopes that her column, “Powering Through Pompe,” will bring comfort to those that are also dealing with Pompe disease. She remembers how scary it was when her son was first diagnosed and wants to help guide others through their journey. Keara is excited for this opportunity and is proud to be working with this site’s publisher, BioNews.

Lab Work Is No Fun for a Child With Pompe

My 4-year-old son, Cayden, had a routine checkup with his metabolic specialists during a recent Pompe clinic day. Although we always know what to expect during these visits, that’s both a blessing and a curse. After Cayden sees the doctor and completes a physical therapy session, we then…

The Benefits of Attending an In-person Pompe Presentation

I attended an in-person educational presentation on Pompe disease this month in Hershey, Pennsylvania, that was hosted by Sanofi, the creator of two drugs that are treatment options for Pompe. I got to hear great information about “Taking Charge of Your Pompe Disease.” Most of the presentation…

My Son’s Good News From His Checkup With the Pulmonologist

Last week, my 4-year-old son, Cayden, had a routine checkup with his pulmonary specialist. These visits occur about every six months. While we are certainly used to the appointments, we left with a great report this time, which isn’t always the case. Cayden’s pulmonologist has been seeing him since before…