Maddie Weil

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.

Maddie has a form of ectodermal dysplasia that affects her teeth, hair, nails and sweat glands.

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).

Maddie Weil and her parents pose for a picture with Senator Tammy Baldwin.
Maddie and her parents pose with Senator Elizabeth Warren (D-MA) while advocating for 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

8 comments on “Marching On After Diagnosis”

  1. 1
    Christy Kingsley on September 25, 2019

    Happy for you Maddie…I wish I can create awareness here in Nigerian my son Oche is really suffering all alone no family to talk to.

    1. 2
      Jodi Edgar Reinhardt on September 25, 2019

      Hi, Christy. We hate to hear that Oche is suffering. Mary, our director, received your email and will be reaching out to you with some possible ideas on how you could raise awareness. Hang in there! You can do this. We are here to listen. ~ Jodi, NFED, Director, Marketing and Communications

    2. 3
      Jonathan on October 1, 2019

      Hi Christy. I’m sorry to hear that things have been difficult for Oche. One of the things we love about the NFED is that they’ve helped us feel empowered to advocate for ourselves and others as well. I’m sure they can be a valuable resource for you too!

    3. 4
      Jodi Edgar Reinhardt on October 3, 2019

      Thank you for those kind words, Jonathan! Christy, our NFED staff is here to help. Give us a call if you need anything or just want to talk! Start by asking for Kelley! 618-566-2020. ~ Jodi, NFED, Director, Marketing and Communications

  2. 5
    Kaitlyn Squibb on September 26, 2019

    Hi Jonathan, Beth, and Maddie. I was scrolling through the NFED blog page when I saw your picture and immediately recognized you! I’m the “teenage daughter” you mentioned in your blog post. I think we met when Maddie was just a toddler, so it’s been quite a few years since we’ve talked. I’m so glad to see that you’ve been able to connect even further with the NFED and attended the conference!

    Meeting your family was such a great experience for me. Even though I was only a shy teenager, and still just figuring out how to manage my own HED symptoms, I remember feeling so grateful for the opportunity to share my experiences with you. I believe that there’s such power in sharing our stories and being able to share mine with your family was something I’ll never forget!

    Just like Maddie, I only have two adult teeth (the rest are babies). Over the past few years I’ve gotten crowns, bridges, and one implant (so far). I just found out this week that I need my second implant placed. To be honest, it’s a bit daunting, but seeing your blog post has reminded me that I’m not alone. And, more importantly, it’s reminded me that I can share my stories (even the stories of frustration and uncertainty) in effort to more deeply connect with others just like me.

    Jonathan, thank you for writing your post! I’m so happy to know your family is well. Tell Maddie to keep on smiling!

    1. 6
      Jodi Edgar Reinhardt on September 30, 2019

      HI, Kaitlyn. We are so glad you “reconnected” so to speak with Maddie in this blog. Please know that you are never alone. All of us at the NFED are here to help and support you. If you ever want to talk, don’t hesitate to call or reach out to us. ~ Jodi, Director, Marketing and Communications

    2. 7
      Jonathan on October 1, 2019

      Kaitlyn, how wonderful to hear from you and to read this message!

      Yes, it’s been quite a while. Maddie was just 3 when we met you, and she’s now a big second-grader! While it was a long time ago, we remember you and your family fondly. That day was a very important first step for us in connecting with the NFED and other families, and in feeling empowered to care for our daughter.

      Hearing you share your experiences that day meant so much to us all, and reading this update reminded us of that. Like you said, there’s a lot of frustration and uncertainty, but sharing our stories allows us to stay connected to those who can understand. That connection to people like you, and to the rest of our NFED family, is an amazing thing.

      We think of you with gratitude so often. Maddie smiled immediately when I mentioned that we had heard from you. She says hi, and the three of us send warm wishes your way!

    3. 8
      Jodi Edgar Reinhardt on October 3, 2019

      We love when we see families connect and have a bond! It can be so powerful as you navigate the journey. ~ Jodi, NFED, Director, Marketing and Communications

Leave a Reply

Your email address will not be published. Required fields are marked *