Personal Stories from the grandparents of Krabbe Heroes
Navigating Krabbe disease is a family matter.
The complexity of care for a loved one diagnosed with a rare disease can also affect grandparents. Grandparents find themselves struggling to navigate how to best support their grandchild and their adult child. They are also sorting out feelings of heartache, grief, and not-to-mention wrestling with not knowing how to help. We invite you to read some of the grandparent’s stories we’ve collected. We hope these stories support all grandparents and give you a better understanding of how Krabbe disease impacts the entire family.
Want to submit your Krabbe Hero grandparent story? Email Mary Meisner.