OUR JOURNEYS

Patient story

Lucas Van Wormer

July 2012

Lucas Van WormerWhen 4-year-old Lucas Van Wormer didn’t have the energy to play like other kids his age, there were lots of doctor visits, but few answers. He had been on a “downward trajectory” for the better part of a year. “We just noticed that he was sluggish and not feeling well,” says Lucas’ father, Steve Van Wormer. “He was basically being misdiagnosed with asthma.”

And the Burbank preschooler’s symptoms looked like asthma – shortness of breath, fatigue and fainting. It was a stroke of luck that provided the Van Wormers with a true diagnosis. A pediatrician filling in for Lucas’ regular doctor ordered a chest X-ray to check for pneumonia, and instead found that the right side of Lucas’ heart was enlarged. A few referrals later, the mystery was solved. In November 2006 doctors discovered Lucas has pulmonary hypertension (PH), a disease that’s rarely diagnosed in kids.

How PH Works

The lungs are delicate, like a sponge, and can only handle so much blood pressure. If pressure within the lungs gets too high – as it does in people with PH – “it’s like having a high-velocity garden hose shooting blood into the sponge,” explains Juan Alejos, M.D., director of the pediatric pulmonary hypertension program at Mattel Children’s Hospital UCLA. Under pressure, the blood vessels in the lungs thicken, decreasing blood flow to the lungs and oxygen flow to the body. “It’s as if the blood vessel was working out,” says Alejos. You can be born with PH, or it can be brought on by small defects in the heart.

"We just noticed that he was sluggish and not feeling well,” says Lucas’ father, Steve Van Wormer. “He was basically being misdiagnosed with asthma."

- Steve Van Wormer

Juan Alejos, M.D., who has been treating Lucas since his diagnosis in 2006, believes that PH isn’t necessarily less common in kids than in adults. It’s just more difficult to spot in children. PH can only be cured through lung or heart-lung transplant (and survival rates aren’t high), but medications that relax the blood vessels can help keep symptoms at bay and keep damage to the lungs from getting worse. Because these medications have only been tested and approved for use in adults, doctors have to use them “off label.”

Lucas is currently on a very low dose of one of these medications, and doing great. “It was literally overnight that we had a different kid once he started his therapy,” says Van Wormer.

A PH PSA

To help raise awareness about PH in kids, Lucas, who’s now 10, is using his lungs – more specifically, his voice. He teamed up with his dad, who does professional voice-over work, to create a 30-second Public Service Announcement to help educate the public about how the disease affects kids.

  • In the video, Lucas makes the following points.
  • Before 1995 there were no treatments for pulmonary hypertension.
  • Today there are twelve PH medications approved to treat adults, but no approved medications for kids.
  • The Pulmonary Hypertension Association (www.phassociation.org) is dedicated to funding research into treatments for both adults and kids, and gifts to the association support this effort.

Many people with PH take as long as three years to get diagnosed. And the lack of treatment can take a serious toll on their health. “We were very lucky and got flagged and found out very early,” Steve says. “For other parents and other patients, I wish that for them as well."

Steve Van Wormer says there is an especially big push to support the Robyn Barst Fund (www.phassociation.org/barstfund), created by pioneering PH researcher Robyn Barst, M.D. When the goal to raise $1 million is reached, an initiative for pediatric-specific PH research will be created.

Many people with PH, he says, take as long as three years to get diagnosed. And the lack of treatment can take a serious toll on their health. “We were very lucky and got flagged and found out very early,” he says. “For other parents and other patients, I wish that for them as well.” Because while Van Wormer feels that with ongoing research time is now on Lucas’ side, it is running out for others with PH. “I still get daily, weekly email updates on kids that lost their battle, that weren’t as lucky,” says Van Wormer.

Lucas, meanwhile, has finished fourth grade and is enjoying his summer break. On his schedule is a trip to Florida to attend a big PHA conference, and a session of summer camp on Catalina Island for kids with heart conditions, run by Alejos. Eventually, he would like to become a voice over actor.

Reprinted by permission
LA Parent Magazine July 2012
Christina Elston - editor

 

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NORD

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.