By Karen Williams
Eighteen years ago, our family was blessed with our second sweet baby boy, with hair so blond and silky soft it was impossible to keep everyone’s hands out of it. Within a week, we noticed that each and every square inch of this baby’s skin peeled off, but we didn’t really think much of it. Newborns are like little aliens anyway, right?!
Skip ahead a year, he had no teeth yet, and dry patches of eczema on his arms and legs. At 18 months old, he finally sprouted two little pointy teeth in front, so we took him to see a pediatric dentist to find out what was going on with our little guy. X-rays showed that he would have no teeth at all on the bottom front, and very few elsewhere. How could that be?
Our older son had none of these symptoms. We had never heard of such a thing. Our dentist told us about a genetic condition called ectodermal dysplasia she had once heard of, and then Google led us to the National Foundation for Ectodermal Dysplasias (NFED). This truly was a life-changing day for our family!
The staff we connected with were so pleased we reached out. It was such a huge relief to know we were not alone. They sent over many packets of information on every topic related to the condition, and we devoured every bit of it, learning as we went. They invited us to attend an NFED Regional Family Conference that just happened to be located in Seattle that summer, not far from our hometown.
It was there that we met NFED Founder, Mary Kaye Richter, and learned all about her story and how the NFED came to be. Listening to Mary Kaye’s stories and meeting other families with ectodermal dysplasias inspired us to get involved, to help spread the word about the wonderful things the NFED does, and to educate people as much as we could on ectodermal dysplasias.
We have three sons in all: Drew is 20, Mason is 18 and Ian is 14. Only the younger two are affected by hypohidrotic ectodermal dysplasia (HED). Over the years our family has volunteered to help with the NFED in many ways, and the support we have received in return is simply immeasurable.
For example, we held a yard sale with the proceeds going to the NFED. We have handed out brochures to our medical and dental teams as well as others in the community so that they can be better informed. We’ve linked our AmazonSmile.com account to the NFED and they get a percentage of all of our Amazon purchases (which adds up quickly with my spending habits!).
We helped out at the Family Conference in Portland, Ore., helping to set up tables for registration. We were able to attend this year because we were awarded a tuition scholarship from a very generous donor, and we are so very thankful. When our boys were younger, they helped at the 2011 Family Conference by donating blood and participating in a special research study on how brothers are affected. I even tried to volunteer for testing to see if the ER-004 protein therapy injections were safe for humans, but it turned out I was one year older than their ideal candidate.
It’s little things that add up BIG in the scheme of things! Meeting other teens with the same issues as them was life-changing for our boys this year as well. That wouldn’t have happened without the fabulous NFED.
The NFED family really is just that…a family. They do so much for all the families affected with any type of ectodermal dysplasia, whether it’s welcoming newcomers and educating professionals, helping families with funding for cooling devices, wigs or dentures, or just putting someone’s fears at ease. They are there for all of us.
Giving back by volunteering and donating is a wonderful way to support this incredible organization! Without volunteers and donations, there would be no NFED, so please consider volunteering and/or donating today!
– Karen and Gary Williams are guest bloggers, members and volunteers for the NFED.
Hey that’s me!
Fantastic article! Of course I am a little biased as this is my sister and her amazing family, but honestly, all of this was new to everyone! Your organization helped to bring it all into focus and has been a great learning and growing tool for my sisters family as well as for the rest of us. Thank you from the bottom of my heart for doing what you do. It means the world to me, as I know it does to everyone else you’ve touched!
Awww. Thank you, Kristine. We are here to help and support families like Karen’s. ~ Jodi, Dir. of Marketing and Communications, National Foundation for Ectodermal Dysplasias
It is great that you can share your story and encourage others to help.
Really informative information Karen. I’ve always know you are very involved but truly enjoyed learning more specifics. Great job!