Our Journeys

Patient Story

Yadira Pulido

Hi, my name is Yadira Pulido and I'm from Mexico. When I was born I was completely dead. The doctors told my mom that if in that night if I would not cry or something I was going to be diagnosed as a child dead. My mom said that after 30 minutes I cried like you would never imagine. I cried, but I was blue. The doctors told my mom that I would only live only for 5 years; my mom so sad.

I came to United States in 1995 when I was 12. I went to a hospital and they told my mom and me that my heart problem was not common and that I would only live another five months to one year. It’s been many years since that and I am 25 years old.

It’s bad but I thank God I’m still here with my mom and dad and all my family. I got married when I was 17 and my husband knew about my problem. He knew that I cannot have kids, but he said he still loves me. He has been there for me and my family.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.