Parents as Rare - Emma and Spencer - The Heart of Parents As Rare

Episode 33 October 20, 2021 00:45:59
Parents as Rare - Emma and Spencer - The Heart of Parents As Rare
Energy in Action by MitoAction
Parents as Rare - Emma and Spencer - The Heart of Parents As Rare

Oct 20 2021 | 00:45:59

/

Show Notes

 

PARENTS AS RARE - EPISODE 033

Emma & Spencer - The Heart of Parents As Rare

As a dad with a rare disease, I often think about the ways my children have been impacted. My children, 11 year old Emma and 5 year old Spencer, share their thoughts and feelings on this inaugural episode. 

EPISODE HIGHLIGHTS

What do you remember about my diagnosis?

I knew it was a muscle disease and that's all anyone really knew. I don't remember the day you told me specifically. 

Do you recall the first time you came to me to talk about my rare disease?

It was when I was doing a school project on the human body and I chose muscles. I came to you for more information about the disease and how it affected muscles. 

What is your advice for other kids who have a parent diagnosed with a rare disease or chronic illness?

When you're ready, learn about the condition so you can help your parents and tell other people about it. Knowing about the disease will help you understand limitations and what activities you can still do together.

What's the hardest thing for you since my diagnosis?

We can't always do the things we did together before, we have to find other things we can do and ensure time for you to rest. It's a different you, having to rest instead of going from one thing to the next like before.

Can you share how you used your school presentation to start Another Helping?

I started a passion project the next school year called Another Helping with a goal of helping people with or affected by mitochondrial disease. I raise money through programs with MitoAction to assist in education, advocacy and awareness initiatives. MitoSantas will begin in November where I'll be raising money to purchase Christmas presents for children with mitochondrial disease.

RESOURCES MENTIONED

MitoAction

https://www.mitoaction.org/

Permission To Feel, Marc Brackett Ph.D.

https://www.amazon.com/Permission-Feel-Unlocking-Emotions-Ourselves/dp/1250212847

Another Helping

https://www.mitoaction.org/join-the-cause/anotherhelping/

Another Helping on Twitter @Bake4Mito

https://twitter.com/bake4mito

Another Helping on Instagram @Bake4Mito

https://www.instagram.com/bake4mito/

FOLLOW ADAM JOHNSON

Twitter @RareDiseaseDad

https://twitter.com/rarediseasedad 

Instagram @RareDiseaseDad 

https://www.instagram.com/rarediseasedad/

LinkedIn

https://www.linkedin.com/in/adam-johnson-8a1473125

CONNECT WITH MITOACTION

Website

https://www.mitoaction.org/

Facebook

https://www.facebook.com/mitoaction

Twitter

https://twitter.com/mitoaction

Instagram

https://www.instagram.com/mitoaction/

LinkedIn

https://www.linkedin.com/company/mitoaction



Other Episodes

Episode 77

March 15, 2023 00:48:49
Episode Cover

Rare Revolution

PARENTS AS RARE - EPISODE 077 A Rare Revolution - HITMC Meets Rare Disease with Grace Vinton, Kristy Dickinson, & Effie Parks   Grace Vinton,...

Listen

Episode 107

April 03, 2024 00:23:59
Episode Cover

Mo's Personal Journey

ENERGY IN ACTION - EPISODE 107 Mo's Personal Journey   Mo has Maternally Inherited Diabetes and Deafness (MIDD), caused by a mutation in his mitochondrial...

Listen

Episode 9

January 20, 2021 00:32:37
Episode Cover

Life with Frankie...A Mom's Journey with Mito

Meet Sue Leone!

Listen