Grandparents and Krabbe Disease
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.
Loss of Grandchild Not Treated
JONI KNAPPER
Grandparent of Krabbe Hero Saylor Irene
This is my story about loving and losing my fourth grandchild, Saylor Irene. Saylor was the precious first born of our daughter, Betsy and her husband, Evan. We are blessed to live about five minutes from Betsy, Evan and Saylor. I am a former NICU nurse and have been a pediatric RN for 42 years. As a result, I was able to help them with her care and hopefully provide some reassurance and support during sweet Saylor’s short life and since.
Loss of Grandchild Not Treated
TAMMY FELDT
Grandparent of Krabbe Hero Dawson
My grandson is Dawson Luke Feldt and he was a Krabbe Warrior. I am his paternal grandmother and I was fortunate enough to be a constant in Dawson’s short life. I lived about 45 minutes away. Dawson was the most beautiful baby and was born healthy (or so we thought). He started not reaching milestones and regressing very early on. By 3-4 months his parents and pediatrician began looking for answers as to why. All tests would come back normal, but we knew something was wrong. Dawson was hospitalized for a week when he was about 7 months old and had undergone many, many tests. Shortly after he came home his parents were given the awful news that he had Krabbe. It was something we never heard of before. Dawson’s parents called a family meeting with all the grandparents (we all live locally) and delivered this devastating news. He was 7 months old.
Loss of Grandchild Not Treated
Debbie and Steve McIntosh
Grandparent of Krabbe Hero Dawson
July 2019 was filled with excitement...a new grandchild on the way. He arrived on July 16, normal delivery, mom and baby did great. He was named Dawson Luke. We had no idea within 6 months we would be devastated by hearing a foreign word at a called family meeting with parents and grandparents - Krabbe. We had no idea what it was, but we knew it was bad because we could barely understand the words coming out of the mouths of our children. (Dawson's parents). Their voices trembling and shaking, tears flowing, and holding each other's hands like a vice grip. As grandparents, our first response was "Are you 100% sure"...and "Where can we get a 2nd opinion". The whole room cried non-stop. Now what?