Getting a six-and-a-half-hour enzyme replacement infusion once a week can be stressful. And I’m not even the one…
Articles by Keara Engle
Oftentimes, a person with a rare disease may struggle with day-to-day activities such as walking, talking, eating, and getting dressed.
Although my 3-year-old son, Cayden, loves preschool, I had to make a tough decision not to send him for a…
I will always be grateful I found our Pompe disease family. It brings me great joy…
Last week, my 3-year-old son, Cayden, was discharged after a two-month hospitalization due to pneumonia caused by a…
Prior to giving birth to my now 3-year-old son, Cayden, I was working part time at a local…
In a perfect world, we might expect doctors and nurses to know about every medical issue that could possibly arise.
We are no strangers to our insurance company. While it’s been great in most aspects, we still have…
Being the parent of a special needs child can be difficult in many ways. One challenge is the effect it…
I’ve previously discussed how doctors and nurses can help in difficult times of health crises. But family and friends…