A Unique Battle for Health and Awareness
In the small town of Auburn, Alabama, two families are coming together to advocate for their children and raise awareness about a rare genetic disorder. Carter Rigsby and Mary Alys Rinehart are both living with Hypohidrotic Ectodermal Dysplasia, a condition that affects the development of ectodermal structures such as hair, teeth, nails, and sweat glands. This rare disease impacts approximately 1 in 10,000 people, making it a challenge for many to understand or even recognize.
The condition often leads to significant health challenges, including difficulty with dental care, which can be both painful and expensive. Unfortunately, many treatments for this disorder are not covered by standard health insurance plans, leaving families to bear the financial burden alone. Recognizing this gap, the two families are now working to push for legislative changes that could provide much-needed support for others facing similar issues.
When Carter’s mother, Morgan, came across a story about Mary Alys last year, she felt an immediate connection. The shared experience of raising a child with this condition brought them together, creating a powerful alliance. “We don’t pray for God to cure her,” said Sommer Reinhart, Mary Alys’ mother. “We just pray that he helps equip us for her to live her best life, and so one of the things he’s done has shown us that we’re not alone.”
Both Carter and Mary Alys face years of dental procedures, some of which are considered cosmetic and thus not covered by insurance. This lack of coverage can be especially challenging for families already dealing with the emotional and physical toll of the condition. In response, the families are advocating for the passage of the Ensuring Lasting Smiles Act. This proposed legislation aims to require health plans to cover treatments necessary for congenital anomalies, ensuring that children like Carter and Mary Alys receive the care they need.
For Rinehart, the issue is more than just medical treatment; it’s about basic human rights. “It’s for basic human health rights, to be able to eat, to be able to sleep,” she said. The families believe that every child deserves access to the care that allows them to lead a full and healthy life.
Morgan emphasizes the importance of teaching her son to stand up for what he believes in. “The way we’ve tried to raise him is that if you see an issue, fight for what you believe is right. And so for us, what we see are digestive issues, speech is an issue. Mental health is a huge aspect.”
Carter’s journey is not just about his own health; it’s also about standing up for every child who faces a similar path. His story highlights the power of community, advocacy, and the importance of fighting for change. As the families continue their efforts, they hope to inspire others to join their cause and bring attention to the needs of those living with rare conditions.
Their message is clear: no child should have to face these challenges alone, and every effort to improve access to care is a step toward a better future for all.
