PARENTS AS RARE – EPISODE 070
Meeting My MELAS Mito Friend – Elizabeth Wood
I met Elizabeth Wood, a fellow mito patient, through connections at Mito Action. Elizabeth was the first person from the mito and rare disease communities that I was fortunate enough to meet in person. I was grateful to meet with her, discussing being rare disease parents and mitochondrial disease. I learned a lot from our conversation and reuniting to record this podcast was just as helpful.
Can you share about yourself and your journey?
I’m still on the diagnostic odyssey with a suspected diagnosis of Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes (MELAS). My journey has been long-term and I’ve struggled with symptoms my entire life. I recently gave up my professional life as a researcher at a think tank where I did policy work and advising. I’m a single parent with a child with special needs and rare conditions.
What is it like being a parent with a rare disease and parenting a child with a rare disease?
My daughter has 16p11.2 deletion syndrome which causes intellectual disability, developmental delays, cardiac issues and epilepsy. She has another rare disease called alternating hemiplegia of childhood, an unpredictable neurological disorder. The physical requirements required of me to lift and care for her when she can’t stand, walk or eat is becoming harder as she grows.
How do you interact with your daughter when you can’t be as active as you’d like?
There are activities I would have never thought to do with my daughter if it weren’t for our limitations. When neither of us feels like doing anything, we can still have fun and we make sure to carve out special time together every day.
How do you create special time to bond with your daughter?
It varies day-to-day depending on what we’re up for, but a lot of our special time is indoors at the end of the day. If I can’t hold a book up for her to read, we will work together to recite our own story and determine what happens through using mad libs. We’ve started recording some of them to have later because they’re special.
What benefits are you seeing for yourself and your daughter as a result of seeing a physiatrist?
This is my new favorite medical professional because they’re helpful and solution-oriented. For us, it’s been a much different medical experience. Appointments are concrete, the physical exams and testing has led to actual insight into what’s happening in our bodies.
LINKS & RESOURCES MENTIONED
No Time Like the Future: An Optimist Considers Mortality – Michael J. Fox
Mitochondrial Myopathy Encephalopathy Lactic Acidosis and Stroke-Like Episodes (MELAS)