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.

Explaining Pompe disease to my son’s kindergarten class

My 6-year-old son, Cayden, and I plan to put together a small presentation about his infantile-onset Pompe disease for his kindergarten class later this week, in recognition of Rare Disease Day on Feb. 29. Unfortunately, he’ll have to miss school that day because he’s scheduled to get his…

My son’s respiratory equipment is being discontinued. What next?

Philips, a company that manufactures and sells respiratory equipment to a big portion of the United States, recently posted a statement saying it was discontinuing “the sale of hospital ventilation products, certain home ventilation products, portable and stationary oxygen concentrators, and sleep diagnostic products.” This change was a shock…

Nexviazyme has worked wonders on my son’s lab results

It’s been a little more than 18 months since my 5-year-old son, Cayden, made the switch to Nexviazyme (avalglucosidase alfa) infusions as the main treatment for his infantile-onset Pompe disease. We started seeing improvements almost immediately, but now that he’s been on the new medication…