By Allison Peck
Listen to the full interview with Melina King on our Kubota Podcast
A Lincoln County child is one of just 200 known cases worldwide diagnosed with a rare genetic disorder, and now her family is asking the community for help.
Willow King was born with SMC1A developmental epileptic encephalopathy, a condition so rare that little is still known about it. For her mom, Melina King, the journey has been filled with uncertainty, small victories and moments that mean everything.
“So far it’s been a huge struggle,” King said. “Every day is a new day with her. We don’t know if something’s going to happen.”
Despite the challenges, Willow continues to make progress—just on her own timeline. She began walking at age 2 and has slowly reached milestones that many families might take for granted.
“Every milestone she hits, it’s a celebration,” King said. “Even the littlest things that she does, it’s massive to us.”
Willow’s condition affects her development and communication. While she cannot yet speak or use sign language, her family knows her voice is there.
“She loves to hum,” King said. “So that’s why we know she has a voice.”
For King, the hope is simple but powerful—that one day, Willow will be able to communicate.
“Everything,” she said, when asked what it would mean for her daughter to find her voice. “To be able to communicate with your daughter.”
The road to a diagnosis was not easy. King said she first noticed something was different when Willow wasn’t hitting milestones. Then in December 2022, everything changed.
Willow suffered a seizure that led to a cardiac event, forcing King to perform CPR on her own daughter.
“That’s when the ball really started rolling,” she said.
From there, specialists and genetic testing helped provide answers—but also brought new challenges.
“It was very emotional for my husband and I when we found this out,” King said.
Now, the family is focusing on what comes next.
They are working to get Willow into an intensive neurodevelopmental therapy program in Des Moines, Iowa. The program includes physical, occupational and speech therapy, along with specialized treatments aimed at improving development.
But it comes at a cost.
For one week of treatment, the program costs about $5,500. For the full three-week program, the total climbs to more than $20,000—and it is not covered by insurance.
“Absolutely,” King said when asked if the fundraiser will help ease that burden.
To help cover those costs, the family is hosting a spaghetti dinner and silent auction this weekend at the Lincoln County Fairgrounds Ag Building. The event runs from 4:30 to 7 p.m.
The response from the community has already made a difference.
“It’s been a massive impact,” King said. “Everybody in the community has been doing a lot of donations… I just love that every part of the community is involved.”
Support has come from local businesses, coworkers and even people outside the area. For the King family, that support means more than just financial help.
“I’m very, very thankful for everybody that’s been involved,” King said.
At the center of it all is Willow—a little girl her mom describes as special, loved and full of personality.
“She means everything to us,” King said.
The family hopes the community will come out not just to donate, but to meet her.
“Just come out and meet Willow,” King said. “She smiles, she loves to hum… she will hold your hand. You won’t regret it.”