On March 19, 2002 our 2nd grandchild Belle Menne was born perfect in every way! For 12 months she developed her fun personality and just when she was about to take her first steps, a subtle shift began to emerge. She began to regress, and within a short period of time she was diagnosed with a late-onset form of Krabbe disease. At 17 months Belle received a stem-cell transplant at the University of Minnesota.
I remember where I was – sitting in a Master’s class a thousand miles away – when my daughter called and told me, “Mom, it’s Krabbe disease, not a tumor on her spine like we were hoping for”. I walked outside the classroom, sat on the floor and sobbed uncontrollably. My daughter Carrie and her husband Eric were given this diagnosis from the neurologist for their precious Belle, age 15 months, and told to go home and make memories. He explained her life would be very short and outlined in detail what her last days would look like. Our entire family was in crisis.
In the following days I was in shock and felt numb. Apparently, hysteria, anger, guilt, denial and bargaining are all normal reactions and nature’s way of allowing us to regroup after a heart-wrenching situation, and allows us to develop some coping mechanisms. I reached out to friends for support. I called a friend who is a Pediatric Pathologist and begged him to give us hope. In my mind Belle was just too beautiful and perfect for this to be happening. As a teacher of adolescents in a treatment program, I had to work. After crying days on end, barely able to function, I finally contacted my doctor and received a prescription to calm me a bit. I share these private details with all who are reading this so you know the feelings you have are normal and you are NOT alone! I felt so all alone crying in my husbands’ arms each night, unable to find support or answers. If only KrabbeConnect and it’s beautiful support people were there back in 2003.
After a few weeks, hope came through as the U of MN offered Belle a stem-cell transplant. Living 1,000 miles away I took a 30-day leave from my teaching job to provide 24-hour care for my 5-year-old grandson as he started Kindergarten. This allowed Mom and Dad to spend their days at the hospital with Belle as she completed her chemotherapy and stem cell transplant. But each time I returned home to Denver, I felt even more sad and helpless. When Belle was 3, my husband and I moved to Minnesota and bought a home one block away from the family! By this time, Belle was blessed with a baby sister and their lives were even more hectic with a baby, a 3 year-old and an 8 year old!
Fast forward 20 years after Krabbe came into our lives. Belle graduated from high school in 2020 and commits daily to live her best life. In March of 2023 she turned 21 and had her first “chocolate martini”. She loves to read, travels with family, and is working with Vocational Rehab to find employment a couple afternoons a week. Even though she’s in a wheelchair and has severe physical limitations, she chooses to have a positive outlook on her disease and her future. I retired in 2021 and spend every Thursday now with Belle. We attend therapy sessions and go to lunch. We work on 3-D puzzles together (she’s the brains and I’m her fingers), paint, shop, and have deep conversations between a beautiful young lady and her grandmother. This also allows my daughter time for herself to get her hair done or just relax and breathe a bit.
I know my journey with Krabbe may be different than yours but I believe we share similar feelings of helplessness and fear, as well as optimism and joy with our Krabbe grandchild. We want to support our children and grandchildren during possibly the most difficult period in their lives. In supporting both the parent and child, we are supporting our health and emotional well-being as well. Living both 1,000 miles away and one block away, I can offer some ideas and suggestions to other grandparents – some time-tested ideas and thoughts that helped us greatly through this continued journey of uncertainty. I’ve learned life can provide both grief and joy in the same day. I’ve learned that love has no boundaries regardless of abilities. I’ve learned that knowledge and facts can release feelings of fear. I’ve learned that love from family and friends can bring us through our darkest days. I’ve also learned that being a grandparent has been the greatest joy of my life. My role as a grandparent and mother have evolved and for this I am thankful. I’m forever grateful for my daughter, who at times had to offer me support and provide me with direction.
If there are any grandparents out there that need someone to talk to, I’d love to listen to your story and support you no matter where you’re at in your Krabbe journey. “Sometimes the best way to carry a heavy burden is to share it with another”.
My name is Diana Moore and I live in Springfield Missouri with my son Ferrell and my granddaughter Regann. At three days old, Ferell received a call from the doctor at Children’s hospital saying Regann had Krabbe Disease which was identified through newborn screening. The doctor said it was critical we come to the hospital immediately, as we had only a few days for testing and to locate a match for a potential transplant treatment. Without this transplant, they told us Regann may not live past the age of two. It was a devastating call. We had never heard the word “Krabbe” before. We were so scared not knowing what could happen to her. We packed up and left the next day. There were so many tests and doctors for a little three day old baby. So after all of the tests results came back she was admitted to the hospital and began chemotherapy. They identified a donor and at 30 days old, she received her transplant. Everything was so uncertain, but we felt the Lord carried us through and now she is our miracle baby at 5 years old.
This is my story of my beautiful grandbaby, Collin. My grandson and his parents (my son and daughter-in-law) live over 100 miles away, so it was a good 2 hour drive. They were here for a visit in October after Collin started to show signs something was wrong. He cried most of the time and could not be comforted by anyone but his parents. They started running tests. They got the diagnosis in January and went to Pittsburg for more tests and to meet a doctor that specialized in Krabbe disease. Although he didn’t qualify for a transplant, she was very helpful.
On September 18, 2017, Mila Rosaleigh Lebow was born at Portsmouth (Virginia) Naval Hospital. All of the nurses were so taken with her. They stated unequivocally that Mila was “perfect”. I was happy to share the moments around her birth.
We are Ken and DeAnne Close, parents of Lesa Brackbill (husband Brennan) and grandparents of Tori.
When Collin got sick, we spent many overnights and weekends with them as a family. We didn’t have a big part in Collin’s physical care because he always looked more comfortable in his parents’ arms and eventually in the arms of his nurses. We could tell he preferred his parents touch above all else. I wished I could have held him more often, that’s one of my regrets. A big part of our support was spending time with Kendra, Collin’s younger sister. We live one and a half hours away and we would jump in the car and stay for a week or weekend. We spent many overnights and weekends and had Kendra at home with us in our town of Markesan. We developed a very special relationship with her and after Collin’s passing, we really miss that time.
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?
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.
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.