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.
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.
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.