Resilient Runner: Palmer girl with rare heart disease honored

PALMER — Aubrey Virgin is 9 years old and has beat out more than 700,000 Alaskans for three years in a row. Aubrey was named one of six $1,500 scholarship recipients from the Summer of Heroes program put on by Alaska Communications and the Boys and Girls Club.

Five youths are nominated and one comes from within the company. Aubrey’s father works for Alaska Communications. Aubrey goes to Pioneer Peak Elementary and each year on January 26, she wears red and brings baked goodies for her classmates and teachers. She passes out the snacks and tells them her story. Aubrey was just 2 years old when she was diagnosed with Kawasaki disease, an extremely rare heart disease affecting children that is incredibly difficult to diagnose.

“I was diagnosed with Kawasaki disease and it made me want to help fundraise for it and help find a cure for it,” Aubrey said.

Aubrey and her family were distraught over the news. Aubrey’s mother, Shannon, would not leave Aubrey’s side in the hospital. Shannon credits family and friends for their support during the difficult time of Aubrey’s diagnosis, including looking after Aubrey’s 8-month-old younger sister. The Virgin family lived in Anchorage when Aubrey and her mother decided to do the heart run. Aubrey leads an active life as a hunter who harvested her first bear and caribou this year. She also plays competitive soccer and dreams of one day getting a scholarship to play soccer in college.

“She’s really trying to get the word out,” Heather Marron of Alaska Communications said. “Her ultimate goal is for early diagnosis and not missed diagnosis. She’s really just a champion for it she’s a great spokesperson for treatment and raising money to help with hopefully finding a cure.”

Aubrey moved to the Valley three years ago with her family. Though her condition was diagnosed early, she still has to be monitored by a cardiologist regularly.

“Hers came on so hard and so fast she was a fairly easy diagnosis,” Shannon Virgin said. “We began her first treatment within 48 hours of diagnosis. She was lucky in that we caught it.”

Her cardiologist was one of the many people who have donated to the Alaska Heart Run, and Aubrey has been named a Go Red For Women ambassador. She has received proclamations from the city of Palmer and Anchorage declaring January 26 to be Kawasaki Disease Day. Aubrey has been the top fundraiser in the state of Alaska for three years running, raising just under $3,000 last year. Kawasaki disease causes swelling of the veins and arteries and is the No. 1 cause of acquired heart disease in children. Aubrey hopes to one day start her own race to combat Kawasaki disease and find a cure, but is focused on spreading awareness.

The $1,500 scholarship was awarded to six heroes within the state, one from North Pole, one from Fairbanks, one from Juneau, two from Anchorage, and Aubrey in Palmer. There is no definitive clinical test for Kawasaki disease, but Shannon had a hunch.

“As a parent always follow your gut,” Shannon said.

When Aubrey decides to go to college, the $1,500 will be transferable to a variety of different schools. Shannon says that her daughter has her whole life planned out already, and wants to study biology.

She returns to the doctors and nurses who have helped to keep her healthy every year and gives them baked goods and thanks them for their help.

“It’s been exciting and fun,” Aubrey said.

Shannon took her family to a book fair and let them pick out any book they wanted. Aubrey chose an almanac and reads it religiously, able to spout off information about animals at the drop of a hat.

“She’s the bug whisperer,” said Shannon.

Aubrey was issued a proclamation by the Mat-Su Borough Assembly on Tuesday recognizing her efforts.

“It makes me incredibly proud,” Shannon said. “She’s turned such a negative experience into such a positive.”