The disease, which is usually fatal, causes the blood pressure in the lungs to get so high that the vessels to constrict, so the heart has to pump harder to get the blood through, Heaton said during an interview with The Park Record.
"It gets worse over time and never gets better," she said.
Since Heaton has exhausted all the medication options in her treatment, the only option left is a lung transplant.
But once the transplant is completed, she will be on different medications, which will take most of her insurance money, said Heaton's older sister Janae Munoa.
"She'll also have to be at the hospital for three days a week and will not be able to work," she said.
That's why Munoa is hosting a fundraiser on Friday, Feb. 8, from 7 p.m. until 10 p.m. at the Sidecar, 333 Main St.
The event will feature an opportunity drawing, a live DJ and dinner, she said.
"Admission is $25, and that will include pizza, chicken wings and one drawing ticket," Munoa explained. "We will also have additional tickets for sale and we will offer private sitting booths for an additional charge."
Drawing prizes will include the grand prize, which is a three-night deluxe accommodation vacation package from the Montage, Deer Valley that comes with $1,000 in resort credit.
"We also have other gift certificates for restaurants including the Riverhorse, Stein Eriksen Lodge's Glitretind Restaurant, Davanza's Pizza and Outback Steakouse," Munoa said.
Additional prizes include two gold summer passes to Utah Olympic Park, lift tickets to Sundance and Park City Mountain ski resorts and gift certificates for the Egyptian Theatre.
"We will also have fine art, snowboards and skis and a professional photo-session package in the drawing," Munoa said.
The family chose the Sidecar, because they know its general manager Randy Marino.
"He and the Sidecar has been very charitable to us," Munoa said.
Those who can't come to the fundraiser can still donate through www.HelpHOPELive.org .
The site is also pre-selling fundraiser tickets, Munoa said.
"If you go to the website and type Madison Heaton in the Patient Name boxes, it will take you to a page with instructions on how you can donate," she said.
Unfortunately, since the Sidecar is only open to anyone aged 21 and older, Heaton, who is 20, will be one of those who can't attend.
"I'm sure it will be fun, and if anyone wants to drop their children off for me to babysit they can, because I'm not allowed to go," Heaton said with a laugh.
Heaton was added to the Lung Transplant List at the University of Utah in December.
Before that, she lived in St. George with her parents.
"Our family is originally from Provo and my parents moved with Maddie to St. George four years ago to be at a lower elevation to help her lungs operate a little better," Munoa said. "Maddie recently moved in with my husband and me in Park City after she got on the list, because if they find a donor, she needs to be not more than one-hour from the hospital."
Heaton, who is one of four on the waiting list, said she doesn't remember not having medical problems.
"For me it's normal, but I've never been able to play a sport," she said. "In elementary school, when we played baseball, I had people run the bases for me, and I've never been snowboarding or skiing or anything like that, just because I can't breathe."
For more information and tickets for the Madison Heaton fundraiser at the Sidecar, visit www.HelpHOPELive.org . To purchase a private booth during the event, contact Janae Munoa at (801) 836-1146 or email@example.com.