The community showed up, as nearly 50 teams from West Plains and the surrounding area gathered for a a three-on-three benefit basketball tournament July 25 at Howell Valley School, raising $31,512 to assist 11-year-old Ava Perkins as she continues treatment for a rare, severe autoimmune disease.
The fundraiser, featuring players ranging from kindergarten to high school, included T-shirt and bracelet sales, bake sales, a silent auction, a live auction conducted by Billy Sexton and Justin Kraft, a dirty soda bar and concessions provided by Anna's Bananas, Razorback BBQ, Primos Grill Mexican Restaurant and Captain D's.
Tournament organizer Megan Nickey said proceeds will help support Ava's ongoing medical expenses, adding that donations may still be made to the Medical Fund for Ava Perkins at West Plains Bank.
According to the Vasculitis Foundation, ANCA-associated vasculitis — the disease Ava is diagnosed with — is a group of rare autoimmune diseases in which blood vessel inflammation damages organ tissue. A 2022 systematic review published in the Journal of Clinical Medicine estimated the incidence of ANCA-associated vasculitis at 17.2 cases per million people annually. The condition is even rarer in children, with pediatric studies estimating only a few cases per million children each year.
For Ava's mother, Devin Wheeler, the ordeal began May 4, when Ava became weak at school, lost facial color and vomited while walking.
Ava was taken to the Ozarks Healthcare emergency room in West Plains, where doctors discovered her hemoglobin level had dropped to 5 grams per deciliter — far below the normal expected range of 11.9 to 15.0 for young girls, according to University of Iowa Health Care reference guidelines. She was immediately transferred to Springfield for emergency blood transfusion.
Though Ava initially returned home, her condition deteriorated rapidly. She began vomiting blood, prompting her family to rush her to St. Louis Children's Hospital, where she required another immediate transfusion after her hemoglobin plummeted again.
Doctors spent nearly a week searching for an answer before diagnosing ANCA-associated vasculitis.
"It took six days to get diagnosed," Wheeler recalled.
Her treatment became increasingly intensive. Wheeler said Ava was discharged after 10 days in St. Louis but had to be flown back by helicopter on June 9 after her oxygen levels plummeted. She progressed from high-flow oxygen to BiPAP and mechanical ventilation before pulmonary hemorrhaging left her lungs unable to function adequately.
"The pulmonary hemorrhage was increasing; the blood was starting to drown her, essentially," Wheeler said.
Doctors placed Ava on ECMO(extracorporeal membrane oxygenation) — an advanced form of life support that functions as artificial lungs — alongside dialysis, plasma exchange and aggressive targeted medications. She remained on ECMO for 10 days and on overall life support for 13 days.
"The hemorrhage stopped, and over the coming days her body reabsorbed [the blood], and she was slowly able to come off of life support," Wheeler said.
Ava now takes nine daily medications, including prednisone and amoxicillin, while doctors closely monitor her condition.
"As long as we can keep her inflammation down, and her blood vessels from getting angry, we have a pretty good prognosis at this point — hopefully just continuing with treatment and hopefully remission at some point," Wheeler said.
Wheeler said the biggest challenge has been helping her daughter understand the ongoing medical care, medications, safety precautions and the weakness that remains.
Much of the hospitalization remains a blur to Ava, who spent her 11th birthday on life support. "She thinks she was there for three days after she had been there for 13," Wheeler noted.
Wheeler said she has watched the greater West Plains community rally around many families through benefits over the years, but seeing that same support directed toward her own family is overwhelming.
"I was actually in the hospital when I saw that this was happening," Wheeler said. "I had mixed feelings, because I didn't know if she'd be here. I didn't know what we would be raising money for at that point."
Now, she said, having Ava present to see her friends and community support means everything, particularly “watching all of these people just rally around our family."
Wheeler hopes the fundraiser also raises awareness about the disease.
"It's very rare," she said. "That's why it took six days to diagnose." She noted that, with the disease, flares can develop rapidly, requiring lifelong monitoring and management.
Although the family's immediate expenses have included travel, lodging, meals and other unexpected costs during extended hospital stays, Wheeler said they also hope to prepare for the future.
"We don't know what the future holds," she said. "We're going to put it back as much as we can because we don't know how long this fight's going to last."
Ava's father, Brandon Perkins, said biweekly trips to St. Louis remain necessary, though doctors hope the visits can eventually be spaced several months apart.
"She's getting better every day,” Perkins said. “She's got a long road. It's just not one thing, it's a bunch of things, but with her medication, there's hope that she can someday be in remission."
For Nickey, organizing the tournament was personal. She said Wheeler is her best friend, Ava is like family and, as a Howell Valley School Board member, she has seen firsthand how the community responds when families need help.
"We have a great community in Howell Valley, and our entire community in West Plains and the surrounding area, that rally around people who are having a difficult time," Nickey said. "People are really coming together and supporting them through all this. It’s been pretty amazing."
When asked what has been the hardest part of her journey, Ava answered simply: "Probably getting my strength back."
She said the encouragement she has received from the community helps keep her positive.
"I'm thankful," Ava said of the tournament turnout.
For now, while the weather's warm, she said her favorite thing to do is go swimming.
TOURNAMENT RESULTS
• Kindergarten–First Grade Coed: Hartville, 1st; Honeybadgers, 2nd.
• Second Grade Boys: Bolt 2, 1st; Bolt 1, 2nd; Thunderboys, 3rd.
• Second–Third Grade Girls: Sour Patch, 1st; Air Ballers, 2nd.
• Third–Fourth Grade Boys: Fury, 1st; Show Me State Warriors, 2nd; Blackout, 3rd.
• Fourth–Fifth Grade Girls: Hoops for Ava, 1st; Swish Sisters, 2nd.
• Sixth Grade Girls: Tune Squad, 1st; Ava Strong, 2nd.
• Fifth–Sixth Grade Boys: Basketbros, 1st; Killer 3s, 2nd; Rim Rockers, 3rd.
• Seventh Grade Boys: Mtn. Grove Panthers, 1st; Greyhounds, 2nd.
• Seventh–Eighth Grade Girls: Dream Team, 1st; Viola, 2nd; Intensity, 3rd.
• High School Boys: Ziz 10th Grade, 1st; AAO, 2nd; Buckets Elite, 3rd.
