ENERGY IN ACTION - EPISODE 047
The Strength of a Mom
Tonie DeLorenze is impacted by mitochondrial disease herself and also has three children with mitochondrial disease.
EPISODE HIGHLIGHTS
What has your journey been like with mitochondrial disease?
I was an athlete in high school, but always had issues with breathing and lung capacity. As I got older, more symptoms developed, all related to my endocrine system. I had twins in 1995, had another child in 1997 and another in 2000. In 2000, I had a heart attack, had to have my thyroid removed, developed PCOS and a lot of other endocrine-related issues began surfacing. I discovered that I had mitochondrial disease through testing performed on my children, who also have mitochondrial disease.
What is your advice for parents who feel they need to advocate for their children and push for a diagnosis?
I believe you know your child better than anyone. Do your research, ask questions and push for answers.
What's your advice for parents newly on the diagnosis journey?
Control your fear. It's normal for a parent or someone who doesn't feel right to be afraid of what it could be. I had no one to talk to or turn to for support, but if you have someone to support you, seek them out. If you don't, reach out to me. As difficult as it is, stay positive and stay strong. It doesn't help anyone if you're not in a headspace of positivity. Lastly, never ever compare your child to another child. As a caregiver, find a way to carve time out for yourself and squeeze in selfcare.
From a mother's perspective, what did you need from those around you that you didn't get when you were navigating your journey with young kids?
Just be there to talk and offer a sense of normalcy. I was so tired and would have loved to have time to sleep and shower. I went through a dark time and it didn't have to be that way. It was bad enough that my kids were sick, but with a little support from people who were in my life before my kids were born, it would have been life changing for me.
RESOURCES & LINKS MENTIONED
Peach: An Exceptional Teen's Inspiring Journey for Universal Acceptance
Peach: Celebrating Life in the Shadow of Death
https://www.mitoaction.org/programs-support/support/positive-peach-packages/
CONNECT WITH MITOACTION
https://www.facebook.com/mitoaction
https://twitter.com/mitoaction
https://www.instagram.com/mitoaction/
https://www.linkedin.com/company/mitoaction
Learn about service dogs with Can Do Canines and hear about their upcoming event, The Fetching Ball.
ENERGY IN ACTION - EPISODE 075 Dalia’s Wish Makes Dreams Come True for the Del Forno Family Nicole Del Forno is the mom of...
Ryan Mendel is a graduate student in genetic counseling who has already immersed herself in mitochondrial research, clinical care, and rare disease advocacy. In...
