37°
The Pulmonary Hypertension Association is hosting its second annual O2 Breathe Gala on Thursday at The Lighthouse at Pier 61 at Chelsea Piers in New York at 7:30 p.m.
Pulmonary hypertension is a rare disease that causes high blood pressure in the arteries of the lungs, resulting in an enlarged heart which can also lose its ability to pump. It can lead to right-heart failure. Without treatment, the average survival rate is only 2.8 years. There is no cure.
In 1994, Chloe Rand became the first child to survive a major heart surgery using one medication in clinical trials, which led to 12 approved medications, helping to extend the lives of many with pulmonary hypertension.
"Chloe paved the way for major breakthroughs in our fight against this rare disease," Mascia-Rand, director of community engagement for the New York/Philadelphia chapter of the Pulmonary Hypertension Association, said. "She passed away in 2006 and today I work each day to heighten awareness in her honor."
Chloe was diagnosed at eight months, which is rare, since many people are misdiagnosed or under-diagnosed. Chloe had multiple heart problems and her aorta was repaired twice.
"There is still no approved medication for children," Masica-Rand said. "It makes me beside myself. My daughter was a warrior in this fight. I am working to seek a cure so no other parent has to go through what I did."
Masica-Rand and her four surviving children regularly raise awareness and money, participating in events throughout the Northeast. Mascia-Rand said the Yorktown community was amazing in its support for Chloe.
"When Chloe died, the funeral home said their phone was ringing was off the hook," Mascia-Rand said. "Every principal from every school came. The bus drivers from BOCES came, people who own local businesses, they all came out in support of my family."
For tickets and additional information, go to http://www.O2breathe.org/nycgala or call 646-568-2068.
Click here to follow Daily Voice Yorktown and receive free news updates.
