I’ve previously discussed how doctors and nurses can help in difficult times of health crises. But family and friends can be a big help, too. My 3-year-old son, Cayden, has been hospitalized in recent weeks, so I’ve pondered some of the ways that my family and friends have…
family
As special needs caregivers, we have many responsibilities. From the moment we open our eyes in the morning until the time our heads hit the pillow at night, our primary focus is caring for our child and their needs. While there’s nothing wrong with that, it can be…
When you hear the word “family,” who do you think of? Most people think of their immediate family and relatives, such as parents, siblings, grandparents, aunts, uncles, and cousins. However, this word means so much more to me. After a rare disease diagnosis, we often…
Recent Posts
- Using approved LOPD combination therapy at home is safe, study finds
- How a Pompe disease diagnosis both tested and transformed our marriage
- New Phase 2 trial tests oral add-on therapy for late-onset Pompe disease
- My journey of learning how to explain Pompe disease to others
- Early trial of late-onset Pompe disease drug yields positive results