“How has your life been different than you imagined?” Brianna asked her mother.
“I didn’t imagine that I would be in the forefront of new genetic revolution to diagnose more diseases than ever, but not be able to treat those diseases.”
On our first day of interviews in Springfield, Massachusetts, Brianna and Therese came to the booth to talk about their lives with Mitochondrial Disease. Therese was not diagnosed with the disease until 2001. Since then, she has become an advocate for the disease, organizing and educating locally and nationally.
Brianna has also become an advocate for people with what she describes as invisible disabilities. See the film she made called I’m Brianna Couture. During the interview Brianna spoke of the effect of the disease on her life. “All the experiences I have had throughout life, to help other kids, to make a change in the world, would not have been given to me if I did not have this disease. It has given me my sense of purpose in life…it is knowing that someone out there needs your help, and having the tools.”
Recently when Brianna spent what she described as the loneliest time in her life, 28 days in the ICU, she remembered looking out the window, knowing there was life out there, but never sure if she would ever get back to it. “Now that I am back in the world, it looks different. It is so much happier, because I am out here. I made it out the window.”
Therese echoes her feelings, “People who have disabilities of any kind, shine light on the beautiful part of life… in life one has to turn around, take a pause, look down and see the harder parts of life. Growing up with our challenges, we take the time to enjoy the beauties in life.”
When Brianna asks what advice her mother would pass on to their future generations, Therese responds, “We come from a long line of fighters, we are not people who give up… The challenges you are given in your life are there for you to grow from, and learn from. You build a resiliency.”