Local youth continues to overcome adversity, raise money for the Alaska Heart Run

PALMER—When Aubrey Virgin was 2 years old, she was diagnosed with Kawasaki disease and spent several weeks in the hospital. Now, she’s 10 years old and a fourth grader at Pioneer Peak Elementary.

She’s still kicking — literally — kicking goals in soccer and kicking up dirt running cross-country. Whatever she does, she gives it her all, her mother Shannon Virgin said.

“She’s one of those kids that gives 110 percent,” Shannon said. “She has had played in soccer games where she’s had a 105 degree fever all week and demanded to go… She went out that game and scored six goals.”

Kawasaki disease is an illness that affects the skin, mouth, and lymph nodes, and is the most common cause of heart disease in children, Shannon said. She said the cause is unknown, but if the symptoms are recognized early, kids with Kawasaki disease can fully recover within a few days. However, it can commonly be overlooked since its symptoms can often lay dormant or show mild affects similar to common fevers.

“I had no idea what it was,” Shannon said.

The window of treatment is very small, according to Shannon. She said Aubrey’s acute symptoms were a “blessing in disguise” because it prompted to get in quickly and were fortunate getting a quick diagnosis.

“I was terrified,” Shannon said.

Shannon said that Aubrey is going to need a cardiologist on standby for the rest of her life. Aubrey will need to take echocardiogram tests every five years.

Shannon said that she was thankful that Aubrey was able to recover from Kawasaki and she is essentially rid of it for life. While she is technically more likely to get it again compared to those who’ve never had it, the odds of acquiring it again are slim, Shannon said.

Aubrey no longer has to deal with Kawasaki, but she as another disease on her hands: Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS). It’s a rare genetic disease with episodes that affect Aubrey for weeks on end, causing a series of symptoms like dry and bleeding lips and chronic pain. She gets symptoms like chills, chronic pain, fevers, bloody noses, and severe muscle pain all over her body.

Aubrey’s episodes can get so severe that she can get disoriented, forgetful, confused and even delirious, getting foggy or not knowing how she woke up in a her bed, thinking she was on the couch.

“I feel really dehydrated. My whole body hurts, I can’t really think,” Aubrey said.

Shannon said that Aubrey’s overall condition has taken an upswing since she started taking medical injections every four weeks. She said that they are much better than steroids with all their unsavory side effects. She said that Aubrey missed a lot of school last year due to flare-ups. But this year, she hasn’t missed any school and feels a lot better.

“Her quality of life has changed immensely,” Shannon said.

Even on a good day, Aubrey is in pain. She said that on a scale from one to 10, she lives every day with level two pain.

“Normally, if I take a shot today then tomorrow I’ll probably feel my best,” Aubrey said.

This constant pain has given Aubrey an extra high pain tolerance, Shannon said. Aubrey is an avid and competitive soccer player and loves to run. She also loves to hunt with her father, Kyle.

“She’s a very Alaskan girl,” Shannon said.

Aubrey recently set a school district record for fourth-graders in the girls’ 1.5-mile cross-country running event, Shannon said. She said that Aubrey is also planning on running Mount Marathon in Seward if and when the chance arises. Aubrey is not one to be held back by anything.

Aubrey said that she doesn’t feel achy when she’s on a run, only feeling it afterwards. She said that takes up all her attention and enjoys that.

“When I’m moving I don’t feel tired. I don’t feel any of that until I stop, then I go, ‘ooohhh, I’m exhausted,’” Aubrey said.

Aubrey’s 8-year-old sister Kyleah heard this and said, “That’s definitely the opposite of what happens to me.”

Everyone laughed.

Aubrey raises money and runs each year for the Alaska Heart Run, befitting the American Heart Association. Aubrey was the top fundraiser three years in a row and continues to participate each year to raise awareness about Kawasaki disease so more children can get treatment in that short window of time.

She said this will be her first year timing her run. She plans to one day start an annual 5K race for Kawasaki awareness.

She has until April 20 to collect donations. For more information, visit: www.facebook.com/donate/417859642107629/ 10156883660300772/ or email akteeny07@gmail.com

Contact Mat-Su Valley Frontiersman reporter Jacob Mann at jacob.mann@frontiersman.com