Elijah Stacy, author of “A Small If”, founder of Destroy Duchenne, and Capricor Therapeutics Consultant says…” , says “You can’t hold anything back if you’re going to tell a story that’s supposed to help people overcome their suffering”.
Transcription:
What I’ve learned from writing a book is that you have to be vulnerable if you really want to make an impact. You can’t hold anything back if you’re going to tell a story that’s supposed to help people overcome their suffering. You have to be honest. Maybe sometimes the things that you talk about are embarrassing or maybe you don’t necessarily want to put that out there, but put it out there because people are more similar than they’re alike.
That’s my belief, especially when it comes to suffering. People relate to that. So to have a book where people could read that and they could see that I’m not alone, it really does help. I’ve learned so much about myself with writing a book. Going through your whole life and then putting it into words and trying to articulate it and trying to have people understand what your life was like, it really does something to you, and it’s been really beneficial for me as the author to write about my life.
Maybe you would even say it’s therapeutic. I want people to know that the Duchenne muscular dystrophy is a very, very serious disease. It’s a fatal disease, and I want people to know that people with Duchenne, though, are just people at the end of the day as well. They love sport, they like to eat food, they like to be with their friends, they like to be with their family.
So, I’m working every day of my life, since I was 15 to do something to change the course of this disease, for this population, for people who are Duchenne, because I care about them, and I think it’s a really unique disease, and I think that people with Duchenne… If you ever get the chance to speak to somebody with Duchenne, you can honestly learn a lot from them. They have a lot of life experience, even though they haven’t lived a super long time.
To learn more about Duchenne muscular dystrophy and other genetic disorders, go to https://checkrare.com/diseases/congenital-and-genetic-conditions/
Excerpt
Elijah Stacy, a young author with Duchenne muscular dystrophy says “You can’t hold anything back if you’re going to tell a story that’s supposed to help people overcome their suffering”.