WASHINGTON — The bustling hallways of the U.S. Capitol may not seem like the ideal place for a 5-year-old, but for Evvy Wigington, it was the right place to represent something bigger than herself.
During her newborn screenings, Evvy, who lives in Fayetteville, was diagnosed with spinal muscular atrophy, a disease that causes muscle weakness. She shortly began receiving treatment through Arkansas Children’s Hospital, including a gene therapy infusion at 8 months old.
Brittany Wigington, Evvy’s mother, recalled being told her daughter would be unable to walk, talk or breathe on her own. Last week, Brittany watched Evvy run seemingly everywhere on Capitol Hill as lawmakers hurried to votes and tour groups walked through the Capitol.
“It was a joy and a scare,” Brittany told the Arkansas Democrat-Gazette with a smile. “It was nerve-racking, but in a good way.”
Brittany and Evvy Wigington, alongside representatives of the children’s hospital, spent two days on Capitol Hill as part of the Children’s Hospital Association’s Family Advocacy Day. The annual event connects lawmakers with patients of children’s hospitals in hopes of building support for policies boosting pediatric care.
The Wigingtons had never participated in Family Advocacy Day until last week. Sheena Olson, the hospital’s vice president of government relations, has taken part in previous events, bringing Arkansas families to Washington, D.C., on most occasions.
“The very first purpose is to show our legislators and our congressmen what our work is, and it’s so much easier to see it than just say it,” Olson explained. “It’s a really good opportunity not only for our individual hospitals, but as a group to push out messaging around children’s hospitals and pediatric healthcare.”
The impact of Arkansas Children’s Hospital on the Wigington family has grown over the years. According to Brittany Wigington, Evvy has had “countless appointments” at the hospital’s Northwest Arkansas campus and in Little Rock. Lainey, Evvy’s 2-year-old sister, receives treatment for cystic fibrosis, a disease damaging the lungs and other organs.
Wigington has managed to create a schedule balancing medical care for her daughters and extracurricular activities. Evvy, who wrapped up preschool weeks before the trip, is taking swim lessons and enjoying gymnastics.
“We are always on the go and always moving,” Wigington said.
While the Wigington family has private health insurance, Brittany Wigington said Medicaid — the healthcare program between state and federal governments — also covers costs, often covering any remaining expenses.
“With how expensive some of their drugs are,” she said, “there’s a lot left over sometimes.
“For sure, the Medicaid piece is a huge part of us,” Wigington added. “We would not be able to fulfill their treatments or medicines or pay for therapies and all of those things without it. It’s something that we cannot lose.”
Olson also stressed the importance of Medicaid. She said an aspect of Family Advocacy Day is emphasizing how some families rely on the program to cover medical expenses.
“Children’s costs are not as expensive as adult care,” she noted.
Brittany and Evvy Wigington were able to meet every member of the Arkansas congressional delegation during their time on Capitol Hill. Wigington said Evvy gave “lots of high-fives, lots of fist bumps.”
U.S. Rep. French Hill, R-Ark., playfully described Evvy as a “wildcat.” The Little Rock congressman served on the hospital’s board of directors for more than a decade.
“It’s so exciting to think babies, because of the work at Children’s Hospital, will be able to run, walk and play without a debilitating spinal disease,” Hill told the Democrat-Gazette.
Rep. Steve Womack, R-Ark., spoke highly of Arkansas Children’s Hospital, saying it “warms your heart to know we have the type of health care delivery” in Northwest Arkansas for helping children like Evvy.
“You really don’t have to be a parent or a grandparent to fully appreciate what we have in our region, but it helps to have that perspective,” Womack, of Rogers, said.
As senators and House members left Capitol Hill for the weekend, Wigington hoped she and Evvy could take some time to be tourists in the nation’s capital. They planned to visit the National Zoo and the National Children’s Museum before returning to Arkansas.
“As many sites as she’ll let me see. She’ll lead the way,” Wigington said.
Alex Thomas
Alex Thomas has served as the Washington Correspondent for the Arkansas Democrat-Gazette since November 2022. He also produces “Arkies in the Beltway,” a weekly podcast covering national politics and the Arkansans involved in public policy debates.
