By Angela and Dante Puorro
Our daughter was diagnosed with hypohydrotic ectodermal dysplasia at the age of 19 months. She was born without teeth, sparse hair and underdeveloped sweat glands. I still remember the day vividly. It was 6 years ago, at 3 o’clock in the afternoon on the Friday before Labor Day. Ava’s pediatric dentist introduced us to the term “ectodermal dysplasia”. The dentist told me to go home and call her pediatrician immediately to get more information while she did her own research. I did just that.
The pediatrician’s office wanted nothing to do with me. They dismissed me by saying that what I needed was a consultation and that the doctors already left for the long weekend. I begged the woman on the phone to just have one of the doctors call me and discuss what was going on with our daughter. She told me that wasn’t what I needed and proceeded to try and set up an appointment for the following Tuesday.
Feeling helpless, desperate and mentally drained, I hung up and Googled the term. It was a horrifying moment in our lives. To hear your child isn’t “perfect” is heart wrenching and then to top it off, the internet listed ALL of the problems associated with ectodermal dysplasias. That was the moment when everything went blurry. “Oh my God, is our child going to go deaf…blind…? ” We had a dentist who didn’t have any information, and a pediatrician who wouldn’t even give us a call back.
Within further internet research, we found The National Foundation for Ectodermal Dysplasias. We immediately reached out and contacted them on the website. A liaison called us back in 15 minutes! She put our minds at ease with great information and had much knowledge on the genetic disorders. She then told us her story. That was the moment we realized we had a new family to turn to.
As we continued on our journey with our daughter we were made aware of the lack of insurance cooperation. The cost of her dentures was offensive. Insurance would not cover them at all. We sent them x-rays, letters from the dentist explaining her disorder, blood work confirming the genetic disorder. You name it, we did it. Still not a penny is paid by our insurance. We were informed that if our child’s teeth were rotting and needed to be pulled, then and only then would they cover her dentures.
That was when my husband and I decided we needed to do something about it. We are very blessed that we are able to provide dentures for our daughter but what about other families? The thought of anyone going through life without necessities like dentures all because insurance is failing them, was extremely difficult to swallow.
We hold the fundraiser “Animals for Ava” to give back to the NFED. Everything they have done for our family is genuine. Now it is our turn to pay it forward. From the bottom of our hearts, thank you NFED.
Editor’s Note: Are you interested in hosting a fundraiser to benefit the NFED? Contact Seth Ferris, NFED Family Fundraising Coordinator, at firstname.lastname@example.org or call the office at NFED 618-566-2020 to start planning your fundraiser. You can also learn more on our website .
You May Also Like: