Patient story


as told by her mother, Orena Alsip

In September 2003, I took my three kids to the Chicken Festival in London, KY. There we met up with my sister and my daughter Amber and her cousins rode rides and had a good time. That was the last time my oldest child got to be normal. She collapsed on the way back to the car and was rushed to hospital. After repeated episodes the pediatrician sent her to University of Kentucky Children’s Hospital to a cardiologist.

In October 2003, she was diagnosed with Primary Pulmonary Hypertension. At that time it was so advanced that doctors didn't expect her to live six months (at most). They took her out of school, she was in third grade. She was placed on oxygen, digetek, lasix, asprin and viagra. In August 2004, she went back to school and did well at first. On August 17, she suffered heart failure and was place in the pediatrics icu. This left her confined to a wheelchair and ended school for her. She worked very hard at keeping up her strength to get to go to school again.

In August 2005, she returned part time and did very well. Until February 2006. She again suffered heart failure. This time they said she would not make it to see summer. She did. She came home and began campaigning for knowledge. We held Pulmonary Hypertension Awareness week last year starting on her birthday and she was the headline in the newspaper. But in January she started coughing up blood. This is coming from her lungs and can't be stopped. She has her good days and makes it through with no bleeding and her bad days where she constantly coughs. But for now we are making it. With high hopes that if we don't see the cure, at least she will leave a legacy of knowledge and awareness to be remembered by.

Pulmonary Hypertension Awareness Week will again be held in London, KY starting April 1, 2006. Amber and the mayor will be signing the proclamation in front of local news the week before. All she wants is to help other kids so they don't suffer like she has.


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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.