We are big sports fans in this house and I have mentioned our hopes that Klaw will be the best pitcher ever recruited by the Chicago Cubs. When we got the VLCAD Deficiency diagnosis, we were afraid that Klaw would no longer have the option to pursue sports even if he desired it.
Over the past year, I've had the opportunity to get to know Colby better and I'm glad that he can be a role model for Klaw and other kids with mitochondrial disease. Colby's story highlights how different mitochondrial disease an cbe for each person affected and it serves as a source of hope and determination.
Colby took the time to answer a few questions for me to feature on this blog during Mitochondrial Disease Awareness Week:
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1 - Thankfully, many infants & children are being diagnosed with mitochondrial disease. You weren't diagnosed until you were high school. What were some of your thoughts when you got the diagnosis?
Some of my thoughts were how am I going to have to change my life/lifestyle and what am I going to have to give up or start doing differently.
2 - As an athlete, you put your body through more stress than the average person. When you add mito to the equation, you have to take even more precautions to maintain your health and stamina. Describe a typical day with how you prepare yourself for baseball and how you recover.
Well, now I am a student coach at Georgia Tech so I have had to change up my routine. My old routine was wake up for a 6 AM workout and then hope and pray that I had enough time for a nap before my next class. Practice from 3:00-6:30 and do it all over again. Things that helped me and my body recover were proper nutrition, knowing my personal limits in workouts and exercise, and as much sleep as possible throughout the day.
3 - Looking back on your younger self and knowing what you have learned about mito, what were some of the biggest warning signs that are clear with 20/20 hindsight?
Well my gastrointestinal problems have been apparent since I came home from the hospital. (bad reflux and couldn't hold down food as a new born) I would always get sick always throw up, but since I never truly played a sport that was extremely high intensity until I was in 4th grade I didn't see a lot of the more intense signals and problems occur.
4 - What advice do have for parents of mito kids who are athletically inclined, to the best of their abilities? What should we pay attention to when our children are playing or exercising that a child may ignore because they are having fun?
This is my personal opinion and knowing that each child is different here are some basics that can be applied to a larger spectrum.
1. Know your body and your personal limitations with energy.
2. Be very careful about heat and hydration. The hotter the days the more water needed and the less activity should be accomplished.
3. Slowly work into athletics or exercise. Never just jump into things until you have specifically talked with your doctor/physician about what he thinks should be your boundaries and work from there.
4. There is a big difference between pushing yourself physically and being stupid. There are times when a little extra push or energy is okay, but then again it is up to the individual. DON”T try to impress people and end up hurting yourself I have done that many times and it never ends up doing me any good in the long run.
5 - What advice would you give a kid like Klaw who will likely face similar issues that you have dealt with should he pursue athletics?
I would give any kid with the ability and well-being to play athletics to pursue them and just enjoy every bit of them. There are some kids who just hate sports, but if you have the passion or the itch you just have to go for it. Keeping yourself active is not only good health wise it is also good for you energy levels. Whatever you can physically do can help your body and have fun at the same time. It teaches life skills and personal skills that cannot be taught by a book, but by just experiencing it first hand.
6 - Can you give some info in the foundation you work with and how others can get involved?
The Foundation for Mitochondrial Medicine supports the development of the most promising mitochondrial disease research and treatments of the many forms of mitochondrial disease. Formed in 2005 and renamed in 2010, our Atlanta-based non-profit organization financially supports treatment based research. From functional brain MRI studies on cognitive fatigue to testing of new drug compounds, including the first FDA-approved drug treatments that began in early 2010, FMM focuses on supporting Institutional Review Board (IRB) or FDA approved studies. Stated simply: we're funding the cures.
The foundation's stewards and founders are parents of patients and medical experts. We were created to accelerate the development of the most viable mitochondrial disease treatments and therapies.
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To read more about Colby Wren's story, check out these articles:
Son of Braves Manager Battles Genetic Disease (AJC)
Human Factor: College Athlete Battles Mitochondrial Disease (CNN)
