Isaiah scores a soccer goalIsaiah scores a soccer goal.

Meet Isaiah!

This interview was conducted in Winter 2011 by Mira Kruger, the granddaughter of a PH patient and a volunteer writer for PHA’s Pathlight newsletter.

Where do you live?
Coeur d' Alene, Idaho

How old are you?
I’m eight years old.

When were you first diagnosed?
I was first diagnosed two months after my fourth birthday.

When did you first start having symptoms of pulmonary hypertension?
I started having symptoms right after I turned three.

What were they?
I would start screaming sometimes and then I would pass out. After I turned four, I would tell my mom that it felt like my heart was running away and that my chest really hurt.

What activities do you like to do?
I really like swimming and diving, riding my bike, playing soccer and baseball, and hanging out with my friends.

Have you ever felt unable to do something because of PH?
No, not really. When I was four years old, I would have to wear a back pack with a small tank of oxygen in it, but I could still play with all my friends during recess and ride my bike. I would tell them that I used the backpack to practice being an astronaut. My mom would put my pills in my juice and call it my "super juice." All my friends thought I was really cool because I had super powers. Also, back then I really like Power Rangers, and my mom would tell me that the tests were to check the strength of my super powers.

How has your life changed since you’ve been diagnosed with PH?
My family moved to a different state so I wouldn't have to use oxygen anymore. I don't get to see my grandma and grandpa or all my cousins very often, but we like where we live now.

What is a message you’d like to pass on to other kids with PH?
You can do almost anything that you want even when you have oxygen attached to your nose.

 

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NORD

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.