By Shannon Brown
Our daughter, Erin, is five years old and is affected by ankyloblepharon-ectodermal defects-clefting (AEC) syndrome, a form of ectodermal dysplasia. She was born with extensive and severe skin erosions.
Since she was weeks old, the National Foundation for Ectodermal Dysplasias (NFED) has been a part of our lives, offering educational, emotional and financial support. Without the NFED, we would not know how to best care for and heal her skin.
Before we found out about the NFED, we felt extremely isolated and lost. They have connected us with other families, which in turn has also helped us learn about different experiences relating to ectodermal dysplasias.
Another way the NFED has been an enormous help has been with financial assistance. They have provided funding for Erin’s dentures through their Treatment Assistance Program. Because of this, Erin has been able to learn to speak more clearly and eat a better variety of foods, therefore, improving her diet considerably.
The NFED has also provided financial assistance in the form of a scholarship for our first Family Conference. We learned a wealth of information and met new families that are dealing with the same challenges as we are.
We are very thankful for the NFED and all they have done for our family.