This month’s Cause Warrior is extra special to me for a few reasons. 1. I read her blog before I ever met her and was awed and inspired by her honesty 2. We have a mutual friend in the “other” Heather who was my big inspiration for starting Cause Warriors in the first place (see October) and 3. I got to spend a short weekend on a writing retreat with both Heathers and our friend Stephanie earlier this spring and it was what I needed to charge my fires to keep writing my other projects.
You’re going to love her as much as I do, so without further ado – here is Heather.
Amanda: Please tell readers about Mitochondrial Disease. I’m a biology information junkie and until I met you I had never heard about it before hearing your story.
Heather: The mitochondria live in every cell but red blood cells. They generate 90% of a cells energy- energy needed to sustain life. You might remember them from Biology class as the ‘Mighty Mitochondria’. When mitochondria do not work properly, they cannot exchange oxygen and nutrients (known as ATP) from one cell to another. As a result, the cell start to die and organ systems become compromised. Organs that are compromised the most are organs that require the most energy such as the brain, the heart, the liver. Many people who suffer from mitochondrial disease suffer from multiple system failures; seizures, heart issues, digestive problems.
Amanda: How has your life been impacted by this disease, and how did that impact inspire you to become and advocate?
Heather: My daughter Samantha was diagnosed with a mitochondrial disease at 6 months. The disease eventually took her life at age 4. Those four years were life changing, and I realized the lack of support and awareness for families. Many times I felt that the doctors and I were educating each other.
Advocating for her was the best work I ever did and I realized the difference between good care and great care was the ability to speak up and work collaboratively with our medical team. When we lost her, I felt the need to continue to do this work in her name, for everything she taught us and the enormous difference one little person could make.
Amanda: As a fellow advocate, I know that all medical causes need three things: awareness, research, and support (and of course money is the glue that holds them together). Which of these things do you feel is the most pressing in your efforts to battle Mitochondrial Disease today?
Heather: There is no cure for mitochondrial disease and diagnosis can be a long, arduous road. I think awareness is always key- people won’t support what they don’t know. Ironically, as we age our mitochondria become less and less efficient and start to die off. Science has found that the key to live longer is exercise and taking care of your mitochondria. As our population gets older, science is starting to research mitochondrial function as our ‘fountain of youth’. Doctors have also found links to mitochondrial function and disease such as Autism and Parkinson’s.
I do feel that it will get more attention in the coming years; last month Children’s Hospital discovered a genetic link for mitochondrial function that they didn’t believe existed before. These break-throughs are huge and so impactful to the work we doing.
Amanda: Please tell us about Miracles for Mito and the events you have planned for the summer.
Heather: It’s a busy summer! We just completed a walk sponsored by my company which raised $4,000. We are also planning a silent auction and dinner at the Melting Pot on August 30th. Tickets are on sale now!
My biggest venture this summer is through the Children’s Hospital Courage Classic Ride and our team Summits for Samantha. This is a three day ride through the Colorado Rockies to benefit Children’s Hospital. If we raise $50,000 through our team, we can direct where the money will go within Children’s. This would mean $50,000 to the Mitochondrial Clinic, research and support for families. The crazy thing is that I think we might make it! We have 52 people riding on our team and in memory of our daughter and we have raised $21,900 towards our goal. We still have a ways to go but it has been amazing and very humbling to see our team come together.
Amanda: What can people like me do to help you and others fighting for the same cause?
Heather: This is a complex, life shortening disease. The best we can do is raise awareness, let people know we are out here and that families are not alone in this journey. A co-worker of mine was talking to her hair stylist a couple months ago. Her stylist mentioned this disease that her son had just been diagnosed with. Turns out, it was mitochondrial; this co-worker remembered our mission and put us in touch with this mom. Once families find us, they are so grateful that they are not on this journey alone and that others understand. We have reached out to 50 families in the past year and been able to provide support, guidance and introduce them to the right specialists. It’s been very impactful.
Amanda: Is there anything else you would like to share with readers about your journey or your advocacy work?
Heather: I think people hear our story and they are overwhelmed by the sadness of it. We lost a child to this disease. But Samantha, in her short life changed who I am and I believe for the better. She continues to be with us in this work, continues to push us and remind us that this is important. I feel incredibly grateful to be her mother, every single day.
Wow! Thanks to Heather for not only sharing part of her journey with Samantha but for making a difference in the lives of families fighting similar battles. If you would like to support the Summits for Samantha team in the Courage Classic, you can donate here: http://www.couragetours.com/2012/samsmom
To read some of Heather’s amazing writing, visit her site: www.samsmom-heathers.blogspot.com
To learn more about Heather’s nonprofit work, visit Miracles for Mito: www.miraclesformito.org And if you know a family facing mitochondrial disease, please share this blog post with them so they can connect with Heather and others on the same journey.