OUR JOURNEYS

Family story

Jessica D'Agostino

Hello, I’m Jessica and I am 16 years old. My uncle passed away four years ago from pulmonary hypertension at the age of 45 although he wasn't expected to live past the age of 18. He lived with me for all of my life but even when I was young, I knew that there was something special about Uncle Larry.

It was only about two years before my uncle passed away that I fully understood what made him so special. I must have been around 10 when I found out what kept my uncle from doing the many things that he once loved such as traveling America, riding horses, and even going to work. My uncle became unable to go to work and had to be on oxygen 24/7. Although he was able to work from home, I could tell he was unhappy. My uncle was an adventure seeker of sorts and, despite his disability, he still lived his life like a normal person. He had such a willingness to live that he didn't let his illness bring him down until about 1998.

It was then that Uncle Larry had to get a special pump that constantly pumped medication into his lungs. 5 years later, my uncle passed away from complications due to pulmonary hypertension. My mother and grandmother went to many pulmonary hypertension meetings and I am devoted to teaching people about this illness that many do not know about. I wear the pin and the bracelet. These remind me of my Uncle’s hard struggle to stay alive and although he lost in the end, it shows that he was able to overcome many obstacles in his life. He extended his life 25 years longer then expected and because of this, my uncle gave me a much better outlook on life.

 

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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.