From Shy to Smiling Spokesperson for Ectodermal Dysplasias

February 15, 2017July 25, 2019 Category: Stories of Hope Posted by NFED

By Dawn Richardson

I rarely had to trim Savannah’s toenails after she was born, and her fingernails were thin and brittle. I had very little experience with infants, so I did not realize this is not typical of children.  Her baby teeth erupted mostly on schedule.  Aside from being small and missing a set of incisors, nothing tipped off our pediatrician that Savannah was different from the average child.

Diagnosis

At age 3, Savannah had her first dental appointment and her first set of X-rays. I will never forget that day. As we waited for the doctor to speak with us, others in the practice would come into our exam room and look at the X-ray. It is unnerving to have so many people staring at the image and murmuring.

After examining Savannah’s teeth, our dentist informed me that Savannah was missing her lateral incisors. This did not necessarily mean the adult teeth would be missing, but likely. I didn’t think much of it. I am missing a total of seven adult teeth myself.

The dentist was also concerned because he did not see her adult tooth buds. However, since her baby teeth were small and difficult to see an X-ray of a child, he said maybe we just didn’t have a good image.

He recommended a panoramic X-ray when she was old enough to stand still for the imaging process. I spent two glorious years in denial until that panoramic X-ray, which showed Savannah was missing all but eight of her adult teeth.

In 2014, I lost my job after my own health crisis. We are still recovering from this setback. Since our family has been so blessed by the generosity of others over the last couple years, we decided we were going to give back and chose the National Foundation for Ectodermal Dysplasias (NFED).

Bowling for Bites

I have spent many years educating my daughter’s healthcare providers on ectodermal dysplasias so it seemed fitting to have an awareness event. We wanted to do something fun and inspirational. The idea of a bowl-a-thon came to me one day as I reflected on our family’s journey through the process of getting Savannah’s first set of dentures, and thus Bowling for Bites was born.

I had marginal experience in organizing an event as part of a team. Previously, I was part of the Board of Directors for a non-profit in my community. I never imagined I could host a fundraiser and awareness event on behalf of an organization on my own.

The NFED provided me with everything I needed to host the awareness event and supported my every effort along the way. Whenever I had a question, they were always there with a prompt reply and supportive voice. We even had the option to have customized informational cards that had Savannah’s picture on them for our event.

Savannah was nervous at first and shy about sharing her smile, but eventually accepted her role as the smiling spokesperson for Bowling for Bites. She knows the funds we helped to raise that day will go toward helping other kids like herself.

Savannah has blossomed and is becoming her own advocate since the event. She was telling me just the other night about how some kids at school were asking about what ectodermal dysplasias are, and she knows so well. She tells them, “It is a disorder, not a disease, so it isn’t contagious.” She also tells them how it has affected her teeth, her nails and her inability to produce tears.

I am proud of my little darling and wish her the happiest 10th birthday ever on the 27th of this February.

Dawn Richardson is a guest blogger and the mother of a child affected by ectodermal dysplasia. 

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