Thursday, September 20, 2012

An Interview with Colby Wren #KnowAboutMito

Last fall, Colby Wren hit the front page of  "mito" news when he was interviewed by several news outlets, including the Atlanta Journal Constitution and CNN. He was a baseball player for Georgia Tech, is the son of Braves Manager, Frank Wren, and lives with mitochondrial disease. When I read an article and found him on twitter, I immediately sent him a tweet thanking him for going public with his struggles.

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:


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.


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)

Wednesday, September 19, 2012

Light a Light for Mito #KnowAboutMito

Each Wednesday during Mitochondrial Disease Awareness Week is set aside to remember the lives that have been lost to mitochondrial disease.


Mitochondrial disease runs the gamut from fairly manageable disorders that have little effect on overall life expectancy to disorders that still carry an overall fatal prognosis. For Klaw, his first year of life was the most tenuous but management of his VLCADD has been successful. He is expected to lead a fairly typical life with continued health management and regular observation of his liver and heart functions, barring any surprises or major illnesses which could throw him into a metabolic crisis.

For others, there is a steady decline in the function on major health systems.  Many children with mitochondrial disease do not survive to reach adulthood. For some adults, a typical, productive life can suddenly take a downturn to debilitating symptoms with little to no hope for improvement.

If you or someone you know has lost the battle to mitochondrial disease, please take moment to light a candle in their memory.

Tuesday, September 18, 2012

VLCADD Friendly Convenience Foods #KnowAboutMito

People regularly ask me how we manage Klaw's diet in relation to his VLCADD. He is currently limited to 6g fat per day. Most toddlers should get 40-50g fat per day. As you can imagine, this can make it difficult for us to just pick up something at the grocery store or at a restaurant for him to eat.

In order for Klaw to eat "fun" meals that incorporate a variety of flavors and foods, we pretty much have to cook at home. It's the only way we can guarantee the amount of fat in each serving. However, sometimes I just don't feel like measuring out each ingredient and using MyFitnessPal or another online recipe app to do the math and determine the fat/carbs/protein in each serving.

Sometimes, I just want to grab something, read the label, & hand it to my kid. Chris & I have found a few favorite "convenience" foods that we keep around the house that are low to no fat and that Klaw loves.

Every (non allergic) kid loves a good PB&J, right? Well, not when one serving of peanut butter has more fat than you can eat in a day.  Thankfully, Trader Joe's carries Better 'n Peanut Butter. It has 1g fat per tablespoon. We use that with sprouted whole grain bread, which is high in dietary fiber, high in protein, & low in fat. Our favorite sprouted grain bread is from, again Trader Joe's. Sprouted Flourless Whole Wheat Berry Bread has no fat at all. So, Klaw gets a full PB&J for a whopping 1g/fat.

We don't just shop at Trader Joe's, I promise. Our local Food Lion & Farm Fresh carries many items that are VLCADD friendly, too. Happy Baby Organic Puffs are fat free, taste like cardboard, and great for road trips. Happy Baby also makes some fat-free yogurt drops, Happy Yogis, in a variety of flavors, too. Yes, these snack items are pretty much devoid of nutrients but sometimes non-staining convenience wins. (These yogurt drops do not stain, in our experience!)

Most stores, including Walmart, are carrying the GoGo Squeez apple sauce packets. Apple sauce is, you guessed it, fat free. Yes, it's full of sugar but Klaw burns energy from sugar pretty efficiently. He's a VERY active toddler and he can't burn fat for energy. As long as he's going, going, going, the sugar in applesauce is not a big issue. A few other brands of squeezable sauces are also fat-free, but the GoGo Squeez brand seems to be pretty ubiquitous while we have to make special trips to Babies R Us or Target for the others.

Pasta & marinara sauce is a quick & easy VLCADD friendly meal we frequently cook. However, I don't always want pasta. Gerber Graduates Pasta Pickups make two flavors, chicken & carrot and turkey & vegetable, which are low fat, easy to heat up, and Klaw loves both flavors. We do limit how often he can have these but it makes for a quick, convenient lunch or dinner option. Especially if Chris & I want to have something high fat like pizza or, well, just cheese for dinner.

Pediasure Sidekicks Clear is a "juice" drink box for toddlers. It's completely loaded with the full spectrum of vitamins & protein. It doesn't contain dyes. Granted, it doesn't contain juice, either. However, Klaw pulls the toddler pickiness every once in a while and this drink provides a quick, convenient way to make sure he ingests calories and protein when he refuses to eat a meal. I don't know of any other fat & dye free drinks that also offer protein, so this is the best I could find. Granted, I have no issues giving him Gatorade Prime on occasion, if the situation and energy expenditure warrants it.

We plan for the unexpected each trip each trip, whether it be traffic delays or just an overexertion by Klaw at play. We always have some of these convenience foods tucked away in Klaw's bookbag (our diaper bag) in case he needs a snack or if we just decide we want to go to a restaurant to eat. We can't take it for granted that we'll be able to find something for him to eat on the fly.

Do you have an "convenience" foods you keep on hand for your kids? What are they?

Monday, September 17, 2012

Mitchondrial Disease Awareness Week 2012

Mitochondrial Disease Awareness Week is September 16-22, 2012. I've planned a week of posts that describe different aspects of mitochondrial disease and how it affects us in more ways than most people realize.

United Mitochondrial Disease Foundation

There are events taking place all over the globe to raise money and awareness for mitochondrial disease, the numbers of which are approaching, if not surpassing, the number of children afflicted with cancer. However, mitochondrial disease is not limited to children. It can affect people of all ages and in many different ways. As research continues, we are finding more connections to mitochondrial dysfunction in illnesses/disorders like Alzheimer's Disease, diabetes, autism, and many more.

If you don't think mitochondrial disease affects you, think again. Every 30 minutes a child is born with mitochondrial disease that will be diagnosed by the age of 10. Each year, more and more adults are diagnosed with mitochondrial disease. As the body of research grows, more and more diseases are showing connections to mitochondrial dysfunction. Chances are, you or someone you know is affected by mitochondrial disease.

Please take this week to learn more about mitochondrial disease and spread awareness to others. The more we learn about mitochondrial disease, the better for all of us.

Please check out last year's Mitochondrial Disease Awareness Week posts.

Tuesday, September 4, 2012

My first blog post ever

 I finally got around to deleting my MySpace account the other day. Look, if you think that's bad, I didn't delete my Friendster account until I started writing this post. Oh, you don't remember Friendster? Shut up.

Back to my MySpace post. Before I deleted the account, I went through my old "blog" posts and found three that were worth saving. Possibly worth sharing, too, but that's up to y'all, I suppose.

Indulge me for a moment. I promise, it's super short.

From the annals of MySpace

September 18, 2006

Current mood:weird
Okay, so I'm walking Boomer on this long walk by on the ocean trail to get him some extra exercise.  It's been a half hour, so we cross Oceanview to walk back home on the sidewalk.  I'm working on his training, making him stop at every crosswalk, etc.  Well, he is not really wanting to sit at this one corner, so I am patiently waiting for him sit.  This construction worker, complete with long silver curly hair is talking as he's walking past me.  It actually took me a minute to register that he was actually talking to me.  "Nature don't make no mistake.  Your mama did you right, girl."  I guess I need to call Joye and thank her for doing me right.  I'll do it right after I bathe the dirty creeped out feeling off of me.
There you have it, folks. The beginning of my blogging career. Epic, huh?
Seriously, though, have you gone back to other social media sites or old blogs you started long ago and read some of your old posts? Do you get a kick out of it? Have you ever reposted an old (perhaps completely pointless) blog post?
Please share some of your favorite oldies in your comments!
I'd love to read them.
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