Steve Van Wormer and Lucas Van Wormer are now among the most prominent faces in the fight against pulmonary hypertension (PH). But who are they? The story of this family is intrinsically marked by an unimaginable turn, the global movement #PHAware, and the chronic disease that is characterized by high blood pressure in the arteries of the lungs.
As a student-writer, Steve Van Wormer started his career in entertainment at Michigan State, but was soon challenged with greater projects and began working at Fox, where he has been for almost nine years. Working as a creative manager, and now as a senior writer/producer at Fox Sports, he learned how to deal with immense pressure. What he never imagined was having to use such skills in his personal life.
In 1996, Steve married Marina, and six years later, Lucas was born. The couple could not have been happier with their new baby boy. But when Lucas was 4 years old, they began seeing signs of a serious problem.
“He was on this downward spiral, not doing well, gasping for breath,” Steve Van Wormer said in an interview with Michael Albright, published on the website #PHAware. “He never wanted to walk, and his lips were blue all the time.”
Pulmonary Hypertension News has been following #PHAware since its inception. Read more about it by clicking on this link, and watch a video about Lucas Van Wormer’s battle with pulmonary hypertension.
Lucas was misdiagnosed with asthma and for nine months his doctors treated him with nebulizers, which didn’t work. “Nine months seemed like a very long time,” Steve said. Finally, a pediatrician recognized the disease and the abnormality present in the boy’s heart.
“The doctor pulls us into the office and says, ‘your kid has pulmonary hypertension’ (basically, high blood pressure in the arteries of the lungs — it massively decreases the amount of oxygen you can take in),” Steve Van Wormer said. “We’d never heard of it. He tells us there’s nothing they can do about it, and one day, he’s not even going to be able to walk; you’re going to have to carry him to the bathroom. It’s a very short life expectancy. Maybe two or three years. We were just floored. It was … devastating.”
Despite the odds, a decade has gone by since Lucas was first diagnosed, and he is now an excellent student. He has even started his own voice-over career, having worked on the show “Family Guy” and the Cartoon Network.
Still, there is no cure for pulmonary hypertension and few treatments for children. The family decided more action was necessary. The Van Wormers started by engaging with the Pulmonary Hypertension Association (PHA), and became not only participants but also speakers at the PHA’s bi-annual conference. As time passed, Steve Van Wormer recognized the efforts and the outstanding work done by the association, but also noticed it was missing much-needed exposure.
Van Wormer, who had started to work with UCLA, created a series of one-minute videos that could be shared by people through social media, starting with Lucas. The videos were first transmitted on Fox and then on CBS, an initiative that greatly helped to raise awareness of PH.
But the family was eager to do more, which led to the project #PHAware. Together with other activists, the Van Wormers started phaware global association, a 501c3 that is focused on creating pulmonary hypertension awareness worldwide through engagement and innovation, to forge a new course for a cure and change PH history. The project has gained considerable attention from the public, with Lucas Van Wormer as its primary image, while the family continues to fight pulmonary hypertension and keep a positive attitude. #PHAware has made over 12 million impressions across social media to date this year, reaching nearly 5 million social accounts.
“There are a lot of people who have this disease or other debilitating illnesses who say, rightfully so, I can’t do this, I can’t do that,” Steve Van Wormer said. “But we’re very optimistic people. We don’t look at the limitations. Lucas may not play sports, but I was never a sports kind of Dad anyway. I come from the arts, and so does Marina, so we got Lucas involved in painting and drawing, and he’s a fantastic artist.”
Marina added: “We always think forward. What is it going to be like in 2025? What other medicines are they going to have? Are they going to have nanobots that are going to go in there and chew it away? What kind of surgeries, what other kind of alternatives to transplants are there going to be? Steve and I don’t look backwards.”
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