By Becky Abbott

I can still remember the day vividly. Aidan was about four years old, when our dentist placed Aidan’s first set of lower dentures. Aidan was little and he worried that they might hurt. I reassured him they wouldn’t hurt, they would make it easier for him to speak and eat, and I couldn’t wait to see his new smile.

Aidan age 4 smiling
This is Aidan before he got his first dentures.

He fidgeted with them the whole way home and I had to remind him for the first few days not to play with them. That week, I sat up at night and wondered if I had made the right decision.

Aidan smiling with his lower dentures.
Aidan is wearing his lower dentures.

Our journey to these new teeth was not as easy one. We repeatedly submitted paperwork and claims to our health insurance, along with supporting documents, to explain why these new teeth were needed and why they were a covered benefit under our health insurance.

Our case was sent to a third party independent review board. They agreed that due to Aidan’s complex dental issues, these teeth were necessary and they should be covered. Throughout the next six years, we still struggled, having to fight to get most of his dental bills related to his bridges covered. It has been a constant fight ever since.

Aidan has needed bridge adjustments, minor surgery and teeth extractions and this is just the beginning of his treatments. As with most kids with ectodermal dysplasia, he will need lifelong dental treatments that will add up to more money than we can begin to imagine.

This is the reason why it’s important to find dental specialists who are covered under your medical insurance, submit your dental claims, and fight for coverage.

I have heard from parents in the ectodermal dysplasias community who feel that it is not worth their time or effort. They would rather struggle and save to pay for their treatments or their kids’ treatments, rather than deal with medical insurance coverage. This seems unnecessary, as parents should not have to struggle to pay for teeth for their kids.

Families should not have to forgo family outings, vacations, making house repairs, or sending their kids to college, just so their children can have the medically necessary dental treatments they need and deserve.

There are a small group of families in the United States who receive coverage for their treatments, without a fight. For the rest, it is worth your time and your effort to fight for health insurance coverage for these treatments. These bills will not stop. After you save up and pay for one, it will be time to start the next treatment, your children will have outgrown their dentures and will need a new set, or they will be old enough for dental implants.

Aidan in 2017
Here’s Aidan from a picture he took at NFED’s 2017 Family Conference.

The Next Fight

Fast forward and Aidan just turned thirteen. His dentures are a part of him. They have helped him immensely and they give him confidence. He has outgrown them and needs a new set. He also needs orthodontic work and an upper bridge. I know his teeth are important and help him speak, eat and contribute to his wonderful smile, that I love to see.

It will be a long, exhausting journey and I’ll have to fight to try and get coverage for his new treatments. Until we have a federal law that ensures coverage of dental treatments under health insurance, I will keep fighting.

Will you join me?


(Becky Abbott is a guest blogger for the National Foundation for Ectodermal Dysplasias. She is the co-chair of our Family-Driven Advocacy Committee and the mother of a child affected by ectodermal dysplasia. You can learn more about what Becky and other NFED families are doing to advocate for a federal law to mandate health insurance benefits for the dental care of ectodermal dysplasias. Our Insurance Assistance Program will help you submit claims to your medical insurance for dental care. )

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