Fundraising walk aims to breathe life into girl’s fight against lung ailment

By JACQUELINE DURETT Correspondent

EDISON — It’s easy to take breathing for granted — most people do it effortlessly all day long.

But Olivia Marie Rodrigues isn’t most people. The 7-year-old Metuchen resident was born with a rare heart and lung disease called pulmonary hypertension.

“A few times as an infant, we thought we had lost her,” said her mother, Christina Rodrigues.

Pulmonary hypertension, she explained, causes high blood pressure in the arteries of the lungs. That pressure can lead to heart failure.

The condition manifests itself in the form of breathlessness, chest pain, dizziness and loss of energy.

“Many patients are misdiagnosed with other conditions, such as asthma, [chronic obstructive pulmonary disease] COPD or anxiety, or are told they are out of shape,” Rodrigues said, adding that treatment options are very limited.

Four years ago, to help Olivia and others with her condition, Rodrigues started the Power for PH PHun Walk, which will be held this year on Sept. 20 at Roosevelt Park in Edison.

Rodrigues said she held the first walk when Olivia’s condition had progressed to the point that she required a central line, which would allow for around-the-clock medication administration.

“I then became a member of the Pulmonary Hypertension Association, and through the mailings, I saw other people holding special events to raise funds and awareness,” she said. “I spoke to a few friends and family, and we decided we needed to plan a walk to get us one step closer to a cure.”

That first walk drew fewer than 100 people, but this year Rodrigues is expecting to more than double that. And as the walk has grown, so has Olivia.

“She has proved to be strong, resilient and very brave,” Rodrigues said, adding that her active little girl enjoys reading, going to school, playing with her two little brothers — and even taking dance classes.

Rodrigues said she hopes this year’s event raises more than $20,000.

“This money will be used for essential patient services, peer-reviewed medical research, public awareness and legislative advocacy for pulmonary hypertension,” she said. “Since early treatment has a significant impact in stopping and reversing progression, public awareness is critical.”

Those interested in the walk are welcome to create or join a team, or participate individually; registration, which includes breakfast, lunch, a bracelet and 10 raffle tickets, costs $20.

The walk will feature a DJ, raffle and activities for children. There is no admission charge for children younger than 12.

For complete details on the upcoming Power for PH PHun Walk, visit www.facebook.com/PowerForPh or www.O2Breathe.org/powerforph.