By Kerri Fasulo
Our 8-year-old, Nicole, was officially diagnosed with hypohydrodic ectodermal dysplasia at the age of 2½. Initially, we were very concerned with the quality of life our sweet little girl would lead.
Since this was the result of a new gene mutation, we had endless questions and absolutely no experience with this subject. When I discovered the National Foundation for Ectodermal Dysplasias (NFED), it was like opening the door to a home. Quickly recognizing familiar faces that would soon become our NFED family. Hearing their stories have helped us adapt and essentially create our own story.
Nicole is a truly kind and confident person who does not allow her inability to sweat to prevent her from playing sports or being outside during hot summer months. She does not allow the fact that she is missing half of her teeth to deny her, her beautiful smile from both the outside and the inside.
It has been through networking with my NFED family and meeting them for the first time at the NFED Family Conference in Falls Church, Va. last summer. Nicole and I walked away with a greater understanding of her genetic condition – knowledge is empowering. She also made new friends (both young and old) that really helped show her that she is not alone.
That’s one of the wonderful things about the NFED family – you quickly realize, you are not alone. We’re all in this together and it’s that support network that helps us all get answers and help that we need. Their slogan “Supporting You. Supporting Each Other” is what the NFED family is all about.
Giving Back
I wanted to thank the NFED by giving back so I led a Don’t Sweat it Walk in Poughkeepsie, New York in 2012 and would love to do it again. It was a wonderful experience!
As a family, we have attended and lent a helping hand at each of the Animals for Ava events at the Turtle Back Zoo in West Orange, NJ where Nicole connected with Ava, another girl affected by ectodermal dysplasias and they formed a friendship.
I loved volunteering at the Family Conference in the portrait studio and connected with some great people. I am paying it forward as best as I can with the time I have available. So should you! If I can do it, so can you. Get involved.
Today, I’m now a state lead for advocacy efforts in New York. I work full-time, I travel for work from time to time, am a member of my local school district Board of Education, am a mom and a wife.
Life is busy. I make the time because I care. Please consider doing something for the NFED and those affected by ectodermal dysplasias.