My life was forever changed in 2012, when my daughter, Alli, was diagnosed with ectodermal dysplasia. At the age of 6.5 years old, Alli visited her dentist after a playground injury to her top teeth. She had all 20 of her baby teeth and all routine cleaning exam visits had been “normal.”
Our dentist took a panoramic dental x-ray as part of her treatment. Upon reviewing the films, he shared the words “ectodermal dysplasia.” We had never heard of ectodermal dysplasia, but instantly knew it would become a big part of our lives.
We had no idea what to do or where to turn. I discovered the National Foundation for Ectodermal Dysplasias (NFED) online and called. The support, education and, in time, friendships have shaped us and made us better.
We spent the coming months and years commuting 240 miles round trip to University of Iowa Hospitals and Clinics. Appointments with genetics, dermatology and several dental specialists resulted in a clinical diagnosis of hypohidrotic ectodermal dysplasia (HED).
It was identified that Alli had 12 permanent tooth buds, which meant she would be missing 20 adult teeth. Learning more about HED, we finally had clarity about her gastrointestinal issues, inability to eat certain foods, frequent overheating, pigment issues with her skin, brittle nails and dry hair.
Her Dental Journey
Alli is two years in on her second set of orthodontic braces. As soon as her braces are ready to come off, she will be ready for her first dental appliance. This will not be covered by our medical insurance even though the cause of her missing teeth is a birth defect and causes several other health-related issues.
We quickly learned that Alli’s dental needs would exceed our financial abilities. I am not one to ask for help or be complacent and just accept the fact that our medical insurance would not cover Alli’s medical needs. Knowing that we are not able to do this alone as her parents, I was extremely excited to hear that the NFED was organizing families to advocate for federal legislation.
I volunteered to be the state lead for Iowa. Family-driven, grassroots action is where we can drive change. The more families involved the better.
I have never been involved in politics and really don’t understand how this process works. Since then, I have learned a lot by asking lots of questions, participating in the NFED webinars, and just getting involved.
Our Success on the Hill
Our first legislative meetings in Washington D.C. in 2017 to educate our legislators were a huge success. Congressman David Young (R-IA) was very responsive to Alli and was interested in doing what he could to help her. This was very motivating.
Once Senator Tammy Baldwin (D-WI) drafted the Ensuring Lasting Smiles Act (ELSA), Congressman Young agreed to co-sponsor and introduce in the House with Congressman Collin Peterson (D-MN). With this news, we headed back for our second trip to Washington D.C. in 2018 to look for a Republican senator to introduce and co-sponsor.
When NFED Advocacy Day arrived last summer, Alli and I woke up early Wednesday morning. We requested an Uber to make an extra early visit to Capitol Hill for the possibility of meeting with Senator Joni Ernst (R-IA) for a brief moment at a “Coffee with the Senator.” In a full conference room of Iowans, Alli was able to share her story privately with Senator Ernst. We took a couple of photos and left knowing she was interested in learning more about ELSA.
In August, 2018, in the 115th Congress, Senator Ernst and Congressman Young both acted to help all NFED families. ELSA was introduced as a bipartisan bill with both Republicans being from Iowa.
Will You Make an Impact?
I advocate for ELSA because of Alli. She single-handedly motivates me to persevere. As a mom, I don’t do everything right and I don’t have all the answers. Together we learn and discover.
So far, we have discovered that we can make an impact and drive legislative change…and so can you! We are looking forward to our third NFED Advocacy Day on Capitol Hill on July 17. We can’t wait to hear about your success stories!
Jen Steele is a guest blogger for the NFED. She lives in Iowa with her husband, Kris, and their two children, Alli and Bennett. Jen volunteers as an advocacy state lead for the NFED.