When my wife was pregnant, I was asked if I wanted a boy or a girl. The answer was always the same, “It doesn’t matter, as long as the baby is healthy.” When Collin came into the world, on December 19, 2010 our doctor said, “he is perfect and healthy.” As his parents, we were so proud and blessed and could hardly believe the miracle we were holding in our arms.
Collin was your typical baby, up every few hours for a feeding, a diaper change and then back to sleep. He started becoming more aware of my surroundings and loved following people’s whereabouts. He was able to grasp and hold toys and bat at them. He got so he could even eat Cheerios on his own. He could roll side-to-side, but never able to sit up on his own. He loved pounding on a small piano and watching Mommy and Daddy move to the beat. He could follow along with books being read and tried to absorb it all. He enjoyed rides in the stroller in the nice weather. Collin was fortunate to go to work with Daddy when Mommy went back to work part-time. It got him out of the house and in new surroundings.
Then it was as if someone had flipped a switch. At about 81/2 months, every one of Collin’s physical movements became forced and deliberate. He tried as never before in order to achieve what he’d done with ease just days before. The problems Collin faced could no longer be ignored.
At his 9 month old checkup, concerns were raised and he was sent to a Neurologist. A MRI was done on his brain and an abnormality was found. Then the worry began. In this short time span, Collin became stiff and tight. He was irritable most of the time unless he was held by one of us. Diaper changes, clothes changes, and baths which he once enjoyed, now all became so difficult and caused lots of tears.
It was 4 months of waiting for a diagnosis and many doctor appointments and blood draws. Then, on January 6th, 2012 I was sitting on the living room floor holding Collin when the phone rang – I recognized the number as being the clinic. Like so many times prior when the clinic would call, my stomach tightened and my heart pounded, as I knew they had the results of the latest test. When I answered the call, I knew it was the genetic doctor. Before he began, he took a deep breath…I knew they had an answer. It was Krabbe Leukodystrophy, which had a life expectancy of 13 months to 2 years. As the tears rolled down my face, my world began to fall apart. Collin was not perfect. All the hopes, dreams and plans I had for Collin were crushed with one phone call and I felt alone.
Our life became a big learning curve on using skills that we didn’t know we had. We had to learn how to administer medicines, use a feeding tube, a suction machine, a cough assist, a vest machine, position him in a stander, multiple braces for him to wear, and figure out what was wrong when he couldn’t tell us. Parenting was now being Collin’s advocate and finding ways to make his life comfortable.
Every day I would wake up wondering if that was going to be the day that my son would die. Then, on January 6th, 2019, I held Collin in my arms as he earned his angel’s wings. We had been grieving this day for many years. But we were still not prepared or ready for a life without our boy.
In Collin’s eight years and 18 days of life, he was, and continues to be the strongest and bravest boy I’ve ever known. He taught us patience, endurance, resilience, courage, strength, acceptance, empathy and the true meaning of unconditional love. Your doctor was right Buddy Boo! You were perfect!
Even though Collin is no longer with us, he remains a big part of our lives. We continue to raise awareness about Krabbe and are fighting to get Krabbe disease added to the Newborn Screening Panel in WI.
As Collin’s father, I offer the male perspective not only on parenting a child with Krabbe, but what it is like to lose a child with Krabbe. I offer a listening ear to anyone on this Krabbe journey, whether you are just beginning or someone that has been here a long time. I’m here for you in any way that I can be.
You are not alone!