By Jill Dolde
My son Nathan (Nate) turned seven on November 19th. He has blessed me and my husband in so many ways. Nathan is our only child. As first-time parents, we were scared hearing something does not look when your child was born.
His scalp was very dry, flaky and red right after birth. Our son was designated as “failure to thrive” as a newborn and was having difficulty gaining weight. The pediatricians tested him for everything they could think of to “rule things out” as they put it.
We were instructed to have him take a sweat test to see if he had cystic fibrosis. When he took the sweat test two times and both times the doctors could not detect any sweat, my husband went online and did some research.
My husband actually diagnosed ectodermal dysplasia before any doctors did. We took Nathan to a geneticist before he turned one and it was confirmed – hypohidrotic ectodermal dysplasia. I did not realize that I was a carrier and my mom was too.
When I was young…
When I was young and my mom was young, no one knew of ectodermal dysplasia. We did not think to ask any questions regarding the shape of and quantity of our teeth. Growing up, neither of us ever realized the shape of and quantity of our teeth were connected to a genetic disorder.
Over the years, we have learned so much about ectodermal dysplasia by speaking directly to the National Foundation for Ectodermal Dysplasias (NFED) staff and speaking to other families over Facebook. I really hope we can attend an annual conference one year. I would love for Nate, for all of us, to meet other wonderful families and create lasting friendships moving forward.
It is easy to feel like you are alone on this journey. It is reassuring to know you are not alone. Our son each and every day shines brighter and brighter through his personality and imagination that knows no boundaries. We always want him to believe he can try anything and never believe “no” is the first and only answer because of ectodermal dysplasia.
We tell him “this is how God made you.” And we truly believe this – that God blessed me and my husband with our beautiful son, with the person that he is, and that we can learn a lot from Nate, too.
I want to thank the NFED and all of the families for sharing their stories with all of us. Their encouraging words are powerful and resonate each and every day. God bless each and every one of you. God bless Nate.Share Your Story