A few years ago, I was introduced to the Boston-based nonprofit MitoAction, which helps improve the quality of life for those affected by mitochondrial disease. As a cyclist, I knew that our mitochondria — tiny organelles found in almost all of our cells — were responsible for giving our body its energy. But I didn’t realize that there was an entire category of chronic, genetic disorders that occur when the mitochondria fail to function properly. Only after I became aware of MitoAction and its work, did I begin to hear of the many people afflicted by this harsh disease. I am glad to be featuring MitoAction’s ED because, quite frankly, not enough people know about mitochondrial disease, and Cristy Balcells is leading the national charge against it!
Cristy Balcells, RN MSN has been Executive Director of MitoAction since 2006. She is mom to three, including Eva, her youngest child who has Leigh’s disease, a serious form of mitochondrial disease. Cristy has established herself as a passionate advocate for people afflicted with Mitochondrial disease (see the video at the end of this post). She is the author of “Living Well with Mitochondrial Disease,” published by Woodbine House in March 2012.
The 10 questions
IN JUST ONE SENTENCE, WHAT IS YOUR PURPOSE IN LIFE?
To be an empathetic and honorable leader for my family and for the mitochondrial disease patient community.
WHAT IS SOMETHING YOU WANT TO ACCOMPLISH BEFORE YOU “EXPIRE?”
It is my wish to one day get a full night’s sleep. Ha ha! Having three children and my youngest with mitochondrial disease, I haven’t slept through the night in ten years! Seriously though, I want to visit Spain with my husband. We’re both hopeless romantics.
IF YOU COULD MEET WITH ANYONE (ALIVE), WHO WOULD IT BE AND WHAT WOULD YOU ASK THEM?
I would want to meet Ellen DeGeneres, and I would ask her to have me on her show to talk about mitochondrial disease!
WHAT WOULD THE TITLE OF YOUR BOOK BE?
Well, I actually just published my first book in March of this year through Woodbine House, Living Well with Mitochondrial Disease. It was a labor of love for the adults and children and their families who are struggling with mitochondrial disease. If I could muster the energy to write another book, it would be about what it’s like to be a working, juggling, loving, special needs mom and tireless advocate.
WHO WOULD PLAY YOU, IN A MOVIE ABOUT YOUR LIFE?
Susan Sarandon. I love how she is both strong and gentle.
WHAT IS A BELIEF THAT IS CORE TO YOUR BEING?
Do the right thing. Always!
WHO ARE YOUR HEROES?
Every parent who faces adversity and fear with dignity and grace. We, the parents of children with devastating chronic illnesses, are a silent but incredibly strong group who are diligent, patient, perseverant, and optimistic. We don’t complain about soccer practice or petty fights with our families. Parents of children who have devastating chronic illnesses have to learn to accept the worst fate imaginable – that your child may die – and then keep living life while being an example of strength, moderation and joy for your child and your family.
IF YOU WEREN’T DOING THIS, WHAT WOULD YOU BE DOING?
I would be running my own business of some kind: selling and marketing coffee or cheese or smoothies or something. I’m a total foodie and entrepreneur at heart.
TELL US SOMETHING SURPRISING ABOUT YOURSELF.
I was a corporate trainer for Dale Carnegie before I got a second degree in nursing and a Master’s in public health. I loved going into companies and leading workshops on attitude, public speaking and stress management. The experience has served me well in my life now as a leader in the arena of mitochondrial medicine.
WHAT QUESTION DO YOU WISH I HAD ASKED?
“What is mitochondrial disease?”
Since I, as a nurse, didn’t know what this disorder was before my daughter was diagnosed, I find it so important to raise awareness. Mitochondrial disease is a non-curable neurodegenerative disorder that occurs when the cell’s power plants (the mitochondria) cannot make enough energy for the body’s organs to function properly. In my daughter Eva’s case, she cannot walk, she is very developmentally, physically and cognitively disabled. However, she is happy and a blessing to us! For some people, mitochondrial disease is “invisible” on the outside, but their lives are very compromised by disabling fatigue, weakness and medical complications. Adults, children, babies, teens, boys, girls – anyone can be born with or develop mitochondrial disease. Mito is related to other neurodegenerative diseases, such as Alzheimer’s, Parkinson’s and diabetes.