I still remember the phone call as if it were frozen in time. It was mid-morning, and I was in bed feeding my newborn, Caroline. With the shades slightly drawn, just a sliver of light crept in, letting us both cozy up and drift off. Caroline was only a week…
Kate’s Take on Rare Care - a Column by Kate Manger
Recent Posts
- Our family’s experience with Pompe disease is just one of many
- Use of methotrexate may make Pompe treatment more effective, per study
- 5 years strong: Combo LOPD therapy preserves walking and lung function
- You’re not failing if you can’t remember every detail about your child
- Muscle damage begins before visible changes appear in LOPD