Aubrey Stratz is your typical four-year-old girl who loves dancing, unicorns and dressing up as a princess. She’s happy and healthy. She adores her big brother, Max. What’s not typical about Miss Aubrey is the rare condition that affects her.
Her parents, Samantha and Rick, noticed that Aubrey’s hair was very fine, short and sparse. When they asked their pediatrician, there wasn’t great concern. That changed after Aubrey made her first trip to the dentist at age three.
While Aubrey’s baby teeth all came in normally, with none missing or shaped differently, an x-ray showed that she was missing six of her adult teeth, according to Samantha.
“The x-ray showed she is missing the top two lateral incisors and bottom four incisors. Due to her age and the size of her mouth, x-rays were not taken of her side and molar teeth. She could be missing additional teeth.”
Learning this new information, the pediatrician sent them to see the genetics team at Children’s Hospital of Wisconsin Milwaukee.
“She was diagnosed with ectodermal dysplasia at our very first appointment. The team recommended genetic testing and upon those results, we learned she has mild hypohidrotic ectodermal dysplasia (HED).”
What was more surprising was learning that Rick was also affected by HED. While he never got his wisdom teeth, Rick does not have any other symptoms. Their family’s HED is caused by the WNT gene.
Armed with the diagnosis, the parents started searching for more information on what to expect and a team of doctors to help them care for Aubrey. They found the National Foundation for Ectodermal Dysplasias (NFED) website and registered.
“The website has been great! I continue to learn more each time I explore. Just now I was reading about advocacy and am looking into getting involved.
The Wisconsin family has been searching for a dermatologist to help address their hair, nails and skin concerns. Aubrey experiences some mild eczema. Her nails grow slower. They aren’t totally sure how much her sweat glands are affected but they are definitely impacted.
“We are still learning. We’ve had a few unseasonably hot days this spring in Wisconsin. Aubrey has quickly gotten too hot playing outside on those days and does not sweat as we would expect. I now know ways to keep her cool. I am unsure at this point if other glands are affected. I’m still working to figure out if there are any additional precautions I need to take if and when she develops a fever.”
To show support for Aubrey, whose hair is slow-growing, Samantha took action.
“I got a pixie cut so that all of our family has short hair. Her brother and dad already had short hair. I will continue to research if there are things we can do to promote hair growth, such as products to use or vitamins/supplements to take. I would love to hear any success stories other families have!
As for their little girl, the diagnosis hasn’t changed anything. She’s still a happy little girl drawing, painting and reading books.
“Aubrey’s happy with her short hair…although I can only assume she may be teased as she grows older,” Samantha said. “I pray we are able to raise a confident child who knows she is beautiful, just like all other children.”
The Search for a Doctor
Right now, Samantha and Rick are doing all of the right things to care for their daughter. They are educating themselves and working to find the best options and doctors they’ll need in the future. They have had difficulty to find a doctor who knows about ectodermal dysplasia but the NFED is helping them locate one.
“I am working to find a medical professional to help answer my questions about Aubrey. I’ll feel much more confident once we connect with someone. Thankfully, NFED has helped and I now have a list of dermatologists who have worked with children affected by ectodermal dysplasia. I welcome any advice!”
Now a year into their ectodermal dysplasia journey, the mom has advice for other parents.
“Reach out. Resources are available. It’s been just over a year since Aubrey’s diagnosis and I’ve learned so much already.
“My dreams for Aubrey are the same for hear as they are for her brother: to live a full life, blessed with health and happiness. If her hair grows, that’s an added plus!”
That’s our dream for Aubrey, too.