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.
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.
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Emma & Spencer Johnson