A Rare Diagnosis, a Remarkable Bond: Finding Support Through Shriners Children's
It was a sunny, bright Wednesday morning, and the weather reflected the warm, cheerful connection between mothers Ashley and Haley.
As they chatter back and forth on a phone call between Bessemer City, North Carolina (where Ashley lives), and Brooklet, Georgia (where Haley lives), their natural rapport is evident.
The pair are each the parent of a child with diastrophic dysplasia, a condition affecting one in every 500,000 American births and characterized by dwarfism, club feet, and other bone and cartilage-related markers. This commonality, which has grown into a strong bond, leaves the two women with a lot to talk about.
“When Haze was 2 months old, we had an appointment with Dr. (Lauren) Hyer, and I asked her if she had any other patients with diastrophic dysplasia because no one I knew had ever heard of it,” Haley said. “She said that she did and that she would check with the other mom to see if it would be OK to introduce us.”
The connection that followed was instantaneous.
“It was wonderful because once we started texting, it was like Haley and I had known each other forever,” Ashley said. “We didn’t have a little person in the family before Charlotte, and neither had their family before Haze. Our first texts were all about the things we could both relate to that no one else we knew could. Since Charlotte is a little older. I was able to tell her about our experience with whatever they were about to go through.”
For both families, the children’s club feet were the first condition addressed. While Charlotte underwent surgery in Greenville to release tension from a heel tendon, Haze received additional care from Shriners Children’s Ohio to address his cleft palate. Back in South Carolina, the Pediatric Orthotic and Prosthetic Services department and the radiology department – both conveniently located within the hospital walls of Shriners Children's Greenville – played active roles in the children’s ongoing care.
Haley and Ashley said they both also struggled to find appropriate treatment before coming to Shriners Children’s.
When we went to other places, we often heard they could ‘try this’ or ‘try that,’ but no one really had the experience with his condition to say, ‘this is what we can do for him.’ Shriners was different. It made us feel like we had someone in our corner who knows exactly what to do with no guesswork.
“Dr. Hyer is amazing and knows exactly what they need,” Ashley said. “But it’s more than just the medical staff that left us feeling like we had found a home. The first time we walked in, the receptionist was there to cheerfully greet us – and every time we return, it’s his familiar face we see first. The other staff members don’t just know our names because they are on the chart – they truly know us and our stories.”
As their conversation wound down, the two mothers joked about a future wedding they hoped would take place between Haze and Charlotte, and made plans to see each other again.
Before hanging up, Haley recalled finding out that Ashley’s daughter’s name was Charlotte – the same name as Haley's grandmother who raised her, and passed away shortly before Haze was born. What felt like more than a coincidence to Haley was the way their lives had intersected, as if the universe had quietly stitched their stories together. “There is just no other way two small people in this big ole’ world would collide the way we did,” said Haley.
Haley and Ashley pictured with their children, Haze and Charlotte, who both receive care for diastrophic dysplasia at Shriners Children’s Greenville.
