Rare condition, real needs: East Alabama mothers fed up with insurance loopholes

AUBURN, Ala. (WRBL) — Imagine being told your child’s ability to eat, speak and smile without complications or pain isn’t medically necessary — it’s simply cosmetic.

That’s the reality for families like the Rigsbys and Clines, who are raising children with hypohidrotic ectodermal dysplasia, a rare genetic condition impacting the development of teeth, sweat glands, skin, and hair.

On a sunny afternoon in Auburn, 13-year-old Carter Rigsby sits at his kitchen table, laughing over a board game with 6-year-old Caroline Cline of Valley. Their smiles hide lifelong medical challenges, ones insurance oftentimes refuses to recognize.

A rare diagnosis and harsh reality

Carter has just four top teeth. Caroline has one and her back molars. Neither child can sweat properly. Both struggle to eat, regulate body temperature and digest food.

“It impacts all teeth development, not just missing teeth,” said Morgan Rigsby, Carter’s mother. “The permanent teeth he does have are misshapen. Before we could reshape his top four teeth, he was bullied constantly.”

The diagnosis came after a routine dental visit. Carter’s dentist noticed his top teeth had erupted before any bottom teeth — a red flag that led to scans, referrals and eventually a genetic diagnosis at Children’s of Alabama.

“There was some relief in finally knowing what we were dealing with,” Morgan said. “But the anxiety quickly set in when we were told most of Carter’s care wouldn’t be covered by insurance.”

Not just a smile — a medical need

Chewing, speaking and digestion are daily challenges.

“For Carter, most of his missing teeth are on the bottom,” Morgan said. “From here to here, he has one permanent tooth, and we’re not expecting more.”

Caroline faces similar struggles.

“Everything’s too crunchy,” said Alexis Cline, her mother. “No biting into apples or toast. She doesn’t have the front teeth to do it.”

Because their children don’t sweat normally, even playing outside carries risks. The emotional toll — from social stigma to bullying — is just as heavy.

“It’s been hard on the bus,” Carter said. “People make fun of the shape of my teeth, and talking has been a lot harder.”

The high cost of being born different

Carter’s family spent $10,000 out of pocket just to align and reshape his top four teeth, basic early work to ease his pain and restore his confidence. But it’s just the beginning.

Bone grafts. Ten or more dental implants. Surgeries throughout his life. These treatments are medically necessary, but insurance companies routinely deny them, calling them cosmetic. 

“If Caroline lost a tooth in a baseball game, insurance would pay to fix it,” Alexis said. “But because our kids were born this way, it’s denied.”

“Families are being forced to choose between paying rent or restoring their child’s ability to eat,” Morgan said.

A push for change

That’s why the families are fighting for the Ensuring Lasting Smiles Act, a bipartisan federal bill requiring insurance companies to cover medically necessary dental and reconstructive procedures for children born with congenital anomalies.

“All we’re asking for is coverage that restores basic function,” Morgan said. “This isn’t about looks. It’s about helping our children live.”

The bill has gained momentum in Congress. Its supporters hope to see it pass in 2026. But until then, families remain stuck in a painful process of juggling appeals, denials and the weight of six-figure medical projections.

Raising an advocate

From the start, the Rigsbys decided Carter would be part of every conversation. Same with Caroline and her family. 

“We want them to understand and feel empowered,” Morgan said. “We told him he had two choices: to sit down and complain or stand up and use his voice for good.”

Carter chose to stand. Caroline did, too.

“Teeth are a basic part of the body,” Morgan said. “Without them, you’re talking bone loss, digestion issues, speech problems and emotional trauma, too. This legislation matters.”

What’s at stake

If the bill doesn’t pass, families like the Rigsbys and Clines face decades of financial and emotional hardship, not because treatment doesn’t exist, but because it isn’t covered by insurance companies they pay for. 

“There are real medical consequences from not having teeth,” Morgan said. “This isn’t cosmetic. It’s essential.”