By Christine Gottschalk

I hope we’ll see you on Capitol Hill this summer.  This is my son, Henry, a budding scientist.

He’s giggly, tells elaborate tales about fire-breathing dragons, and loves to roll down hills with his friend, Mario.  He also wants to bite into an apple.

Henry has hypohidrotic ectodermal dysplasia (HED).  As a part of this syndrome, he also has anodontia, the absence of all teeth.

Around 15 months, tired of hearing “don’t worry, your son will develop teeth, it’s just delayed,” we found a new pediatrician and dentist who diagnosed him.  We went immediately to the internet, found the National Foundation for Ectodermal Dysplasias (NFED), and reached out to a volunteer family liaison.

Our First Family Conference

And it clicked, all these symptoms we viewed and treated separately – difficulty eating, painful eczema, skin sores, that our son seemed to “run hot” – were related. We made plans to attend the next Family Conference, it was a year away.  It felt like a long time.

Henry enjoys Kids Camp at his first NFED Family Conference.

I remember sitting in the hotel lobby staring as people who looked like my son checked-in.  “Think they’re here for the conference,” my husband joked.  We felt instantly connected to this community.

It was reassuring to meet young adults with the same condition who were thriving and to hear how other parents advocate for their kids.  But, it was also frustrating to hear about the insurance battles and the lengths families go to to get medically necessary dental care.

Time to Speak Up

We were excited when the NFED launched its advocacy campaign for federal legislation mandating coverage for medically necessary care for congenital anomalies, including teeth. We enlisted our relatives in the letter-writing campaign and joined the first Ectodermal Dysplasias Advocacy Day on Capitol Hill in 2017. It was empowering to join others, to hear their stories, and tell ours.  One story stood out to me.

Henry and his dad, Peter, are my super heroes.

A nurse earlier in her career was weighing whether to pursue an advanced degree and put off needed long-term dental care, or to pay for the dental care and delay (perhaps forgo) graduate school. This decision will affect her earning potential for the rest of her life.

It’s a decision my son might have to make. It’s care that they would receive if needed as a result of an accident or an injury. It makes no sense, and it doesn’t have to be this way.

We have an incredible opportunity to make a change for our community and others – health insurance should cover medically necessary care including teeth whether it is a result of injury, illness or congenital anomaly – that is why we have it.

It was hard for me to hear that my perfect child had a rare condition.  It was mind-boggling to hear my insurance will not cover the care he needs.

Join Us on the Hill in July!

Christine Gottschalk is a guest blogger for the NFED. She is married to Peter Scott and has a little son, Henry, who is affected by HED who is four years old. Christine is the advocacy state lead for Md. and Washington D.C. She also volunteered for the NFED ‘s 2017 Family Conference Committee.

One comment on “Tales of the Fire Breathing Dragon”

  1. 1
    Martha Ellis on June 27, 2018

    June, 27 2018
    Dear NFED Family
    I think that parents of all these beautiful children have to remember, ” at least you have been educated enough to be able to find help, whether it be the internet or word of mouth, while they are young.”
    I am 65 years old and have spent thousands and thousands of dollars on my dental throughout my life. I had teeth grow, but they never formed in the right direction. The teeth themselves were very healthy and strong., they just didn’t grow the right way. That left me with numerous dentures throughout my life. Their is no getting away from them. If you don’t get them this spirals into a whole different direction with digestive issues and illnesses.
    Approximately 13 years ago I was able to do eleven implants, over forty thousand dollars and that didn’t include a bone graft. By the way I have had 2 bone grafts and many surgeries for a cleft palate hair lip. Mine was a severe case where the upper middle lip and the hard palate, upper mouth into the nose were split.
    Four years later I had breast cancer which included chemo and radiation. I have had so many different surgeries like, a hysterectomy, torn meniscus, replaced right knee, soon left knee, namonia, ear infections, cysts in different parts of the body that absolutely had to be removed because they wouldn’t stay dormant, they grew, but at least these weren’t cancerous, and other sicknesses…are these related to EDD…or just life circumstances…one doesn’t know for sure. I am now slowly loosing my implants because of bone degeneration, I have five left and they need help. I have no way to pay for dental, except on a credit card.
    I have talked with doctors and dentists, they say this is cosmetic…We say IT IS A NECESSITY. Since when are teeth cosmetic for our people, medical insurance will NOT budge.
    So I guess what I am trying to say is…do your best and plan ahead, you know the issues now. That is a very big step. Your child needs to feel good about themselves to have confidence. What is more important, teeth for your child or a new car, education. This is the reality. God does not give you more than you can handle, he knows your strength even if you don’t.
    I am so glad that NFED was formed to HELP all of you!! I applaud you!!!
    Thank you
    Marty Ellis

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