ENERGY IN ACTION – EPISODE 058
Jackie Bautz is the sibling to TJ, who has a mitochondrial disease called MELAS. She shares the story about her brother’s diagnosis and what her family is doing to raise awareness and push for a cure.
Can you tell us about your family and your brother’s diagnosis?
I come from a family with five siblings including myself and my younger brother TJ, who is 7 years younger. When TJ was born, he had failure to thrive issues, but overcame them and had a normal childhood until he was in middle school. Upon completing a school hearing test, he was referred to a hearing specialist where it was determined that he had 40% hearing loss, which he was born with. He was fitted with hearing aids and he went on to graduate high school and college. Two weeks after his college graduation, my parents called to tell me something was wrong with TJ, that they were rushing him to the hospital and weren’t sure what was wrong. During a week in the hospital, he had two major strokes and was released from the hospital without answers. A week later, TJ was diagnosed with the mitochondrial disease called mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS).
How has the MELAS diagnosis affected your relationship with your brother?
It has been a learning process. Conversations are different since his strokes because he has to think about his responses, which can be uncomfortable. TJ still has the same interests as before so we can still connect on the same things as before, but there are limitations to what he can do, like working or driving.
How have your parents dealt with TJ’s diagnosis?
They’re very strong, but their plans for their lives has changed in that they moved to Florida to retire and travel, but they’re caring for TJ and they can’t leave him for more than a couple of hours at a time. It’s been difficult, but they’ve stayed very strong.
Is anyone else in your family a genetic carrier for MELAS?
TJ is the only carrier. My mom and I underwent genetic testing and my mom isn’t a carrier. This originated with TJ, which is even more rare.
Can you share about TJ Strong?
TJ Strong originated the first week when TJ was still in the hospital. We had t-shirts made and we started researching the disease to see what we could do for TJ and also the community. I came across MitoAction and we do a lot of fundraising and get involved in any events that we can. I’m running the Falmouth Road Race for MitoAction this August for the third year.
RESOURCES & LINKS MENTIONED
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