From a very young age Cameron’s mom has always told Cameron “Can’t Never Could” never knowing how much Cameron would actually take that to heart. Cameron Copeland is a twenty-three year old young man who grew up doing everything from riding bikes, playing sports, doing art projects, to participating in a Culinary program and being on the Archery Team for 4 years in High School.
Cameron was always coming home from school with something new that he wanted to participate in. The minute he would get in the car he would say, “Mom, they have this going on and I want to do it.” He wanted to participate in everything he could, so he kept his mom busy trying to keep up with all the activities but she says she has always loved his go getter attitude! There was no limit to what Cameron thought he could do.
Tragedy struck early in Cameron’s life, when his twin sister passed away at 3 days old with hypoplastic left heart. Cameron continued to develop normally until 4 years old when his pediatrician noted he was falling below the 5th percentile. Cameron’s mom, Charla, wasn’t the least bit concerned as neither she nor his dad were very tall people. But, at the advice of the pediatrician, they went to an endocrinologist to look into growth hormones. Before beginning growth hormones, the doctor decided to do an MRI and the results changed the life of Cameron’s family forever. The radiologist that read Cameron’s MRI had just studied Leukodystrophies and recognized the Alexander brain pattern which was almost unheard of at that time. So, the family was fortunate to have an early diagnosis but they were left with no information, even the neurologist that diagnosed Cameron sent them off with little more than a shrug of the shoulders.
Charla and John, Cameron’s dad, were left to seek out information on their own and discovered the United Leukodystrophy Foundation. Charla attended her first ULF conference in 2002. “I was so unprepared, it was absolutely heart wrenching, hearing all the stories of families affected by this disease, some had already lost children and one family had lost 2 children. I couldn’t even imagine and the pain was growing so deep that this may be in store for Cameron and it was almost unbearable.
I’m a believer, and it was a turning point for me. I went to my hotel room and cried out to the Lord knowing I could not handle this on my own and at that moment I turned Cameron over to the Lord saying, Lord, I can’t do this on my own, Cameron is yours and do whatever you need to do with him just help me to handle whatever may come. -Charla Bruns
Then, at the conference, Charla saw hope! Charla met Steve and Lori Hargrove and their amazing son Russ. Russ was a 14 year old with Alexander Disease going to school and being a regular kid and she kept up with him, giving her hope for Cameron each year. Unfortunately, sweet Russ lost his battle with Alexander Disease at 22.
It has been 19 years since Cameron’s diagnosis, and while there have been many peaks and valleys, Cameron’s family still continues to say “Can’t Never Could” even today Cameron says Can’t Never Could when someone is trying to do something! One thing is for sure: Cameron is a determined soul and has a “Can Do” attitude in his approach to life.
“Cameron’s made a name for himself and he’s done that since the day he was born. It’s been a very cool journey to watch my son grow, and I feel like the most privileged mom to witness his journey and the many people he has impacted along the way. Even through some of his struggles he continues to remain positive and happy….his whole life, he has been happy from the time he wakes up to the time he goes to bed. What a joy!
“Life has thrown some curve balls our way, but through it all I have been blessed and cannot complain. I’m not saying it has all been easy as there have been peaks and many valleys of worry year to year not knowing what the future holds. But you can’t focus on those, you just live today. I have been given a gift of an incredible son that I am so blessed to still have and my prayer is to enjoy each day the Lord continues to provide.” -Charla Bruns