By Jonathan Weil
Our daughter, Maddie, is an amazing kid. At almost seven years old, she’s bright, curious, creative, funny and kind. She loves school, music, swimming, gymnastics, biking, horses and dogs. She has a form of ectodermal dysplasia that affects her teeth, hair, nails and sweat glands.
Getting Our Questions Answered
When Maddie was diagnosed with ectodermal dysplasia at the age of two, we weren’t sure where to turn. We felt helpless. How would we learn about the condition? How would we support and care for our girl?
We were lucky to find the National Foundation for Ectodermal Dysplasias (NFED) who replied to our inquiries quickly. They set us up to meet a local family whose teenage daughter could talk to us about her experiences, and they helped us find dental care at a local hospital with an NFED affiliation.
The NFED has also provided us with an invaluable connection to a larger community, which has helped us to support Maddie as she learns to understand the challenges of her ectodermal dysplasia and to appreciate the ways that she is unique and special. The NFED has done so much for us.
They provided us with a crash course in genetics, helped us to make sure Maddie is safe and hydrated in warm weather, given us guidance and advice about the extensive dental work Maddie will need and even helped us revise our tooth fairy stories. We also learned how to talk to adults in Maddie’s life about how to best meet her needs in school, in summer camps, etc.
Connecting at Conference
Attending our first Family Conference in 2017 changed our lives. Maddie found friends there that shared a special bond with her, and she still talks about those connections. We met other families that we could talk to and share experiences with. We learned so much about developing an ongoing plan for Maddie’s care, and we took part in Advocacy Day on Capitol Hill.
We’ll never forget the sense of empowerment we all felt when we met with our senators and representative to advocate for legislation to support dental care for those affected by ectodermal dysplasias. I have been happy to act as a co-state lead in ongoing advocacy efforts to enact the Ensuring Lasting Smiles Act (ELSA).
Looking Forward to the Future
We know that Maddie has a long road ahead of her. While she has several baby teeth, x-rays have revealed that she probably won’t have more than two adult teeth, so we know that she’ll require a lifetime of specialized dental care to ensure that she’s healthy.
We’ll have decisions to make, challenges to face, and financial hardships to deal with. But, we don’t feel alone in our struggle.Jonathan Weil
Thanks to the NFED, we’ve come a long way from our days as a family who felt helpless when faced with an unknown diagnosis. Now, we know how to find the information we need.
We engage in fundraising activities to raise money for the NFED. We connect with other families whenever possible, and we take an active role in advocating for ELSA, the legislation that will change the lives of so many families like ours!
We’re so grateful to have found the NFED, and we’re looking forward to ensuring a bright future for our Maddie while helping this amazing organization continue its mission.
Jonathan Weil is a guest blogger and an advocacy state lead for the National Foundation for Ectodermal Dysplasias. He and his wife, Beth Tascione, and daughter, Maddie, live in Massachusetts.Share Your Story