Alex’s story started out just like any other story. The perfect little baby who fed well, was always normal on the growth charts and in general was a happy baby! We were also happy that he had the perfect little shaped head to be bald. You see, we did not know at the time that his extended baldness had anything to do with a rare genetic disorder, so we always joked it was a good thing his little baby head was shaped so perfectly.
A Grandmother’s Take on Ectodermal Dysplasia
As a baby, Weston Walker experienced all of the same issues his mom, Randi, had when she was born. He struggled to breathe. He choked and spit up a lot. He didn’t cut teeth. For Debbie Reed, Randi’s mom and Weston’s grandma, it was heartbreaking to live it all over again. They visited doctor after doctor, asking if this was normal. Read how a diagnosis changed how this grandma looks at life.
In Remembrance of Joseph J. Barone
The National Foundation for Ectodermal Dysplasias (NFED) family recently lost a patriarch. Joseph J. Barone passed away peacefully on February 23, 2018, shortly after a fall. He had reached the age of 97 years, which is quite an accomplishment in itself. But for someone like Joe, it was even more impressive.
The Tear Is A Permanent Friend
EEC syndrome is a shared experience for several people in Karsen Buck’s family. The teen talks about the challenges she faces and what has her concerned about the future.
Diagnosed Over the Phone With Ectodermal Dysplasia
When Mason Langefeld still had not developed any teeth by his one-year-old check-up, his mom, Renee, decided to call a local dentist. He asked her a few questions that finally pointed them toward answers and a resource to help them care for their son. Read how they successfully fought their insurance company to pay for their son’s dentures.
Remembering Lee: A Man Among Men
NFED Founder Mary K. Richter remembers Lee Goggin, who passed unexpectedly following a tragic accident, as a man among men. In him, parents in the ectodermal dysplasias community saw a bright future for their own children which they now knew could include a beautiful wife and gorgeous, precious children.
My Life as Nurse, Mom and Advocate
In all her years as a PICU nurse, Amy Leverenz had never heard of ectodermal dysplasia until the day her daughter was diagnosed with the rare condition. She found the National Foundation for Ectodermal Dysplasias, educated her self and is now educating physicians and legislators. She’s on a mission to impact the lives of other families like hers for the better.
This Is Not Some Hollywood Smile Issue
A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.