By Zabrina R.
During pregnancy, I knew there was a high chance of my son, Colt, being diagnosed with ectodermal dysplasia because Colt’s grandfather, Colt’s great-grandmother and I are all affected. Shortly after Colt was born, genetic testing confirmed the diagnosis as x-linked hypohidrotic ectodermal dysplasia (XLHED). We were informed that his specific gene variant had never been medically researched or recorded.
Finding the Right Dental Care Team
When Colt was three years old, I started researching different dentists and specialists in the area to help him. Because he had no teeth, he was on a strict, soft-food diet. We were turned down by multiple dentists and specialists, as each either had no experience with ectodermal dysplasia patients or gave a time frame of eight to nine-years-old before they could help Colt.
We finally found a fantastic specialist team in Houston, Texas, who took on Colt’s case, and we are so thankful! During the first visit, they confirmed through x-rays that Colt only has one tooth bud that has not broken through the gums and will likely never have any other teeth.
Throughout multiple visits, we got impressions done, and the team worked diligently to create some of the smallest dentures. They told us that he was one of the most complicated cases they’ve had. Even then, they didn’t give up on our boy and took on the challenge!
Dentures Make a Big Difference
Today, Colt is five years old and wears a set of top and bottom dentures daily. The Houston Dental Implant Team gave our boy his smile and helped with his jaw formation, expanding his food varieties and helping him “fit in” with his classmates. Thanks to his dental team, he also met with two other boys affected by ectodermal dysplasia, which helped Colt understand and realize that there are others just like him, outside of his immediate family.
We have also confirmed that Colt does not sweat at all. Living in Texas is a daily challenge, as the temperatures and humidity can be horrendous, but Colt takes on that challenge every day, and we are so proud of him!
Team Colt
I am his most prominent advocate, spreading awareness and informing others of Colt’s condition. I do this by using social media platforms, creating the “Team Colt” foundation, designing shirts and hats for others to support Colt. This shows him that he has a team of people who love and support him just as he is – perfect.
Zabrina R. is a guest blogger for the National Foundation for Ectodermal Dysplasias. She and her family live in Waco, Texas.
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