Powering Through Pompe
— Keara Engle

Amid the chaos of the holidays, our family experienced a little more than we bargained for. The day after Christmas, I woke up feeling unwell. My body ached, and as the day went on,…

Living in Pennsylvania means having to deal with some pretty brutal winters. We do get to experience all four seasons, which is beautiful, but when the cold weather comes, it can be a bit…

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…

It’s no secret that the holiday season is a busy time for everyone, but imagine having to incorporate a 6.5-hour infusion therapy into the mix of it all. That’s the case for our family…

My 6-year-old son, Cayden, has been seeing an ear, nose, and throat (ENT) doctor since he was about 2 years old. His metabolic disease specialist, who manages everything related to Cayden’s infantile-onset Pompe…

I recently attended a meeting for my 6-year-old son, Cayden, at his elementary school. So many people are working with Cayden at school, including his teacher, nurse, and physical, occupational, and speech therapists.

It’s been over six years since my son Cayden was born with infantile-onset Pompe disease. Today, I consider myself to be an experienced parent when it comes to this disease. However, I’ll never…

Next week, my 6-year-old son, Cayden, will celebrate something even more exciting than Halloween: He’ll be headed to Parris Island in South Carolina to watch my younger brother, Ben, graduate from the…

Recently, I read an article here at Pompe Disease News that brought me back to six years ago, when my son Cayden was a newborn. The article, “Twins do well on high-dose ERT…

I remember the day my 6-year-old son, Cayden, was diagnosed with infantile-onset Pompe disease like it was yesterday. Hearing the news broke me, and I was scared half to death. I had…

Many folks don’t know what an implantable venous port is and what it’s used for. However, my 6-year-old son, Cayden, is very familiar with it and its purpose. Cayden received a port when…