Connecting Patients and Research
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?
Krabbe disease is cruel. As a Christian, we asked a thousand times WHY? HOW? We prayed day and night for a healing miracle.
What were we to do to help our children when we were clueless ourselves? Once we digested this diagnosis, studied and learned what we were up against, we knew our job was to do WHATEVER. We would drive the 55-minute distance at the drop of a hat if they needed anything. But honestly, the parents were in shock, plus learning how to care and comfort their terminally ill child, wondering in fear when the next phase would appear. They had no idea what they needed….except a miracle.
So….as Grammy, I would go in, hug the parents and Dawson, give him some love and start my routine never asking what do you need. I unloaded groceries we brought, cleaned, cooked a meal, did laundry and other household chores to keep myself from breaking down.
Pop would give hugs, say something cute and funny to Dawson hoping to bring a smile to the room, help unload groceries, stroll Dawson around the neighborhood singing to him and holding him to give his parents a few minutes to take a breath and get ready for the next round.
As if the diagnosis wasn’t bad enough to effectively support Dawson, I needed to learn tube feeding, suctioning and other medical machinery to keep him comfortable and alive for another day. It was incredibly scary, but I did it.
We were able to find the strength to help this sweet child not only because of love, but because we had amazing support and an outpouring of love from so many incredible friends. As a woman, many of my girlfriends reached out to me with hugs, love, tears, cards and yes, wine. As a man, it is much harder for them to express emotions and feelings…but I shared my support with him. I am incredibly thankful that Steve and I have a relationship where we can laugh together, cry together and support each other. Talking, sharing and letting our feelings out was our self-care.
For those grandparents that are facing this journey….don’t ask ” what do you need “, “how are you “, or “what can I do “….just go in and do.
Find someone you can talk with, cry with, and know that it’s OK to go out with friends from time to time. Don’t let Krabbe steal your friends…trust me, they are essential. And PRAY. There is nothing that has shaken my faith more than KRABBE, but the old saying was true for me….If God leads you to it….he will get you through it. He certainly is, one day at a time.
As I think of Dawson today, I see him whole, healthy, running and even flying since now he has wings. I daily miss his infectious smile, and the incredible look of love in those beautiful eyes, but we sacrifice that to know he is finally KRABBE FREE.
Fly high Dawson! X O
P.O. Box 264
Rosemount, MN 55068-0264
(800) 800-5509 toll-free
A day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.