April 16--Cordelia Skuldt's parents had never heard of pulmonary hypertension before she was diagnosed with the disease.
At the time, they didn't know it would force the 11-year-old South Middle School student to eventually quit dance classes and stop walking her dog and, some days, make it hard for her to go to school or get around her house.
Not many people know about the disease, Cordelia said, and it is difficult to diagnose. So, when a teacher asked if the disease could be highlighted at the annual staff basketball game between the two Arlington Heights middle schools, Cordelia and a tutor took it one step further.
She is asking people to take the Blue Lip Kiss Challenge to raise awareness about the disease and money for research.
"For a whole two schools to know what pulmonary hypertension is," she said, "That's pretty big."
When Cordelia has what her mom calls an "episode," her lips turn blue and she faints. She has asked people to take a photo of themselves with blue lips and post it on social media with hashtags "PHAware" and "Bluelipkiss."
So far, a Facebook page for her challenge includes photos of friends, pets and complete strangers with blue lips. Oak Brook firefighters posted a photograph, and challenged Arlington Heights firefighters to do the same.
At Friday's staff basketball game, organizers planned to help attendees participate in the challenge by having a "selfie station," including blue lips pasted onto Popsicle sticks.
The staff basketball game, which typically raises funds for a charity, raised more than $11,000 for the Pulmonary Hypertension Association, said Dana Hackett, the eighth grade teacher helping to organize the event.Staff is still counting the money raised, she said.
"We know that, with it being one of our own, it's really sparked a lot of interest," Hackett said.
That's important to Cordelia, who wants pulmonary hypertension to get the spotlight, for once.
She was first diagnosed with the disease when she was four, after she passed out in a Trader Joe's, said her mom, Juliet Skuldt. It was hard to figure out what was wrong, and Cordelia had several more episodes before doctors made a diagnosis, Skuldt said.
Dr. Dunbar Ivy, a heart specialist at Children's Hospital Colorado who has worked with Cordelia, said her type of pulmonary hypertension is rare: fewer than one in a million children get it.
The blood can't properly flow through Cordelia's lungs, and to compensate, the right side of her heart works harder, he said.
There are other forms of the disease, and doctors don't know the cause of Cordelia's type and they don't know a cure, he said. None of the available medications have been approved in the U.S. for children, in part because the disease is so uncommon, he said.
"The form she has is extremely rare and is, unfortunately, incurable," he said.
Sometimes, Cordelia only has to go for a few, significant doctors appointments each year, Skuldt said. And sometimes -- like this year -- she misses much of the school year.
But she stays at grade level by watching classes online at home when she can't make it to school. The district provided a tutor and an aid who takes notes, keeps track of her homework, and, on days Cordelia makes it to school, carries her backpack, said Piper Boston, principal at South Middle School.
Cordelia is often nauseous from the 10 medications she takes each day, she said.
About a year ago, Cordelia began carrying oxygen everywhere with her. Medicine is pumped into her through an intravenous tube that prevents her from swimming, she said.
She has had a procedure to put a small hole in her heart, allowing the blood to flow easier. She still feels the symptoms of an episode -- heart pumping, shortness of breath -- but it helps keep her from passing out, she said. Skuldt said she has seen progress in pulmonary hypertension research, even in the years since Cordelia was first diagnosed.
To Cordelia and her mom, the key is raising awareness and money for research, and the basketball game helped.
"It's kind-of cool," Cordelia said, of the basketball game. "I kind-of feel like a star."
sfreishtat@tribpub.com
