A Rare Diagnosis, a Remarkable Bond: Finding Support Through Shriners Children's
When their children were diagnosed with diastrophic dysplasia, Ashley and Haley found more than specialized care – they found each other.
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.
