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.
Dawson continued to fight this Krabbe for 8 more months. He seemed to be stable for the most part but he and his parents needed support. Palliative care had begun very quickly. Dawson had to go out of state for more testing and a g-tube. He was hospitalized for several days. Dawson did get very sick at one point but we all thought that he was rebounding. While we knew it was coming, his death really surprised us as he seemed to be feeling better. That call was like a nightmare and I couldn’t wake up.
We were fortunate in a sense that Covid 19 shutdowns had begun at about the same time as his diagnosis. Shutdowns were a huge blessing to us. My daughter and I were teachers, so classes went virtual. This allowed her to move in and help with Dawson’s care. My husband and I were able to be there several days during the week. We tried to help in any way that we could be it financial, moral support, cooking, cleaning, or watching Dawson so mom and dad could rest. I learned all the machines and therapies that would help Dawson be more comfortable. Knowing our time would be short, I made holidays extra special. My most special times with Dawson were when I read to him.
I found comfort with family, friends and a Krabbe facebook page. I really don’t know how I coped. I prayed, cried and talked with family and friends. I tried to learn all I could and read many books by parents that had gone through this journey. I wanted to be prepared for myself as well as my family. Self-care was a hard one because my focus was on my grandson. Cry if you need to. Talk about it, and educate yourself.
This is the worst thing that your family will ever go through. Find someone to talk to as these feelings will beat you down. Join a support group if one is available. I was blessed with amazing friends who would visit, get me out, prayed with me and cried with me.
Dawson was the light of our lives and our first grandchild. Don’t be afraid to talk about your grandchild. They are important, their lives matter! All I can do now is educate others and support the effort to bring newborn screening to our state. Even though my relationship with Dawson was unique and different from what I had expected, it was the most beautiful and special experience of my life. He had a knack for bringing people together whether it be family, friends or the community in general. I share his journey with anyone who will listen, it is the way I keep him with me.
Thanks for this opportunity to share Dawson’s story