By Ashley Braden
My four-year-old daughter, Nora, has been diagnosed with hypohidrotic ectodermal dysplasia. Before she was born, we had never heard of ectodermal dysplasia. There was no history as far as we know on either side of our families.
Signs and Symptoms
When she was about two, we went to her pediatrician, and he suggested we go see a pediatric dentist. We were nervous, but didn’t for sure know what all everything meant yet. We went, and then had x-rays done which confirmed what we had feared. Many, many missing teeth.
This was where we first heard the words spoken. “Possible ectodermal dysplasia,” the dentist said. “Genetic, possibly affect more of our children, life-long battle,” were more words he used.
I went home and cried for my daughter. Wishing I were given this diagnosis instead of her. Not even knowing fully what everything entailed yet.
Not long after this, we were at my sister’s wedding which was held outside at the end of May. Nora was the flower girl, and there was not much shade. Towards the end of the wedding, we noticed Nora getting extremely red, blotchy and lethargic.
She was overheating due to her missing sweat glands and inability to sweat. That was when we realized that this diagnosis was about more than just missing teeth.
Nora will be starting kindergarten next year, and I am very worried about bullies. She has already had a few incidences of kids bullying her even as young as three and a half.
Saving For Teeth
We’re starting her dental treatment plan! After her very first appointment, we took her to Build a Bear and let her make a bear. She calls it her tooth fairy bear and he goes with us to all her appointments.
This last time we went, the dentist let her actually use his equipment on the beat first and brushed its teeth to help her be more comfortable. She loved that! I thought it was the sweetest thing ever!
At first, it was extremely scary to have to think about the process of Nora going through this as well as having to pay for it.
Our dentist told us some people save for college for their kids. You will be saving for teeth.Ashley Braden
This is why we are supporting the Ensuring Lasting Smiles Act (ELSA) so strongly, and we are so thankful for the work being done towards that!
I pray for Nora and her self worth. I dread the day she asks me why God made her this way. I know it is coming though, and so I am researching as much as I can and preparing for that day.
I pray one day she will realize just how beautiful she is and be able to see her diagnosis as a blessing instead of a curse. I pray one day she realizes just how beautiful she is and that God made her exactly that way for a purpose.
Our dentist also told us that Nora will be going to the dentist so much that she will want to become one! And I pray she does!
We are so thankful for the National Foundation for Ectodermal Dysplasias (NFED) and the resources they have provided. Both in materials and in friendships!
Ashley Braden is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives with her family in South Carolina.