ONCE UPON A GENE - EPISODE 169

Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO dadvocate Andrés Treviño

Andrés Treviño is a dadvocate, author and storyteller. His story is full of twists and turns and even moving across countries to save his child. I had the pleasure of meeting him in person at the Global Genes Patient Advocacy Summit and I'm thrilled that you get to meet him too, because happiness is meant to be shared.

EPISODE HIGHLIGHTS

Can you tell us where your story begins?

Andy and Sophia are the reason I got into advocacy. Andy was born in Mexico City with a condition called NEMO in 1999. Within 48 hours of birth, he developed a life-threatening infection and he wasn't able to fight the infection without IV antibiotics. My wife and I quickly became experts in extreme parenting, living in the hospital for almost 1000 days with Andy, battling infections of his nervous system, bones, GI tract, sinus and skin. We found a hopeful solution in moving to Boston. In Mexico City, we received a diagnosis of bad luck, but after a couple months at Boston Children's Hospital, we got a real diagnosis and real answers. In 2004, our daughter Sophia was born. Cells were gathered from her umbilical cord and at a couple months old, additional blood was taken from her bone marrow. The bone marrow and umbilical cord stem cells were used in a complex procedure to replace Andy's affected cells. 

How are Andy and Sophia now?

Andy is 23 and graduating college in December. He is studying Communications. Sophia just recently started college. They have a very special bond. We also have a third daughter Tanya who is 13 and a blessing. 

What motivated your decision to do the work you're doing?

My career was originally in professional communications, but after what we lived through, I wanted to help others facing similar situations and facing rare disease. I get to meet so many people in the rare disease community that inspire me with their resiliency. 

What are your tips for someone who wants to tell their story?

Think of six words that explain your story, like "happiness is meant to be shared", which is what I use to share my story. This gives you a starting point. Canned stories, or those that are read from a script, doesn't convey a story told from the heart. A raw story is sharing something very difficult and emotional which makes listeners feel bad for you, but it doesn't leave them compelled to do something. A well-told story is crafted, moments are selected to connect with the audience and practiced instead of read. Positive stories move people and make others feel hope. 

LINKS & RESOURCES MENTIONED

The Disorder Channel

https://www.thedisordercollection.com/

Andy & Sofia: Stem cells, scientific miracles and one fit savior

https://www.amazon.com/Andy-Sofia-scientific-miracles-savior/dp/0615422373

Living Proof Advocacy 

https://www.livingproofadvocacy.com/

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