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.
Grandparent Story of Transplanted Grandchild (Living)
DIANA MOORE
Grandparent of Regann
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.
Grandparent Story of Transplanted Grandchild (Living)
MARY MEISNER
Grandparent of Belle Menne
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.
Grandparent Story of Grandchild Living with Krabbe disease
BECKY "MIMI" LEBOW
Grandparent of Mila Rosaleigh Lebow
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.
Loss of Grandchild Not Treated
AUDREY CUSHMAN
Grandparent of Collin
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.
Loss of Grandchild Not Treated
JONI KNAPPER
Grandparent of 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 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 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?
Loss of Grandchild Not Treated
Nancy and Darrell Cotterill
Grandparent of Collin
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.
Loss of Grandchild Not Treated
Ken and DeAnne Close
Grandparent of Tori
When we found out that we were going to be grandparents we were overjoyed. Because of our own special experiences with our grandparents, finally becoming grandparents ourselves was something we had waited for and looked forward to. Our daughter, Lesa, went into labor while we were waiting for our flight from California to Pennsylvania but we arrived a few hours after Tori was born. Seeing her for the first time was incredible. She had a full head of black hair just like her mother. She was beautiful. We spent six weeks in Pennsylvania helping Lesa and Brennan adjust to life with a newborn and loved every minute we had with Tori. Ken even taught her about the different types of Hershey’s chocolate and told her she couldn’t date unless the boy asked for his permission. We cooked, cleaned, and helped in any way we could while Lesa recovered from a c-section and held Tori as much as we could.