When our son, Carver, was diagnosed in 1995 with hypohidrotic ectodermal dysplasia (HED) at just four months old, we found the NFED. I remember talking with Beverly from the foundation and her peaceful, calming voice assured me that they were there for us.
It wasn’t long before I found myself selling raffle tickets for an NFED fundraiser and raising awareness about ectodermal dysplasias in our community. I was so appreciative of the amazing ability of our founder, Mary K. Richter, who started the NFED in 1981 for her baby boy, Charles, who was affected by HED, and other families. I, too, felt compelled to do the right thing and help in anyway I was able.
Throughout the last 20 years, we have fund raised, talked about HED on our local news station and have been featured in numerous community newspapers. We also wrote a book called Carver’s New Smile about getting dentures. We raised awareness at school and passed out medical brochures to area dentists and physicians.
It was and still is my responsibility to continue to support this foundation that empowered us to raise our son with the proper tools to manage ectodermal dysplasia. Of course, over the years we have gained such valuable gifts no one could have predicted, such as the relationships our son has benefited from by meeting and knowing many other families affected. He knows first hand that he is not alone in this world with a rare condition.
Carver can tell you that this is the utmost comfort in his life to have attended so many Family Conferences and experience his connection to others affected. Since our first Family Conference, I have felt as if you all are my family. I serve as a volunteer to help the people in my NFED family.
How could I ever repay this valuable gift that keeps giving? I feel a passion to serve the foundation and am a member of the Patient Care Council and the Family Support Council.
As of today, I am also a part of a committee to inform legislators about the need for proper medical insurance coverage for people affected by ectodermal dysplasias. The need for medical insurance coverage alone for dental care is the single, largest expense for most families.
Why should a family have to sell their family automobile or home in order to afford dentures or dental care for their child? These dentures also need to be updated many times throughout their long lives creating greater and ongoing expense.
Our son at 20 years old has acquired more than $50,000 out-of-pocket expenses for dental care alone! And this is with a good insurance policy but does NOT cover dentures or implants. The need for insurance policy changes for our children and adults born with these congenital abnormalities needs to include medical coverage to correct this birth disorder and that means dental services.
I am passionate about being a volunteer on this committee and hope to bring about this needed change. I also feel strongly that every child and adult affected by ectodermal dysplasias should be able to obtain the proper care and attention that they deserve.
Our committee’s goal is to have a great presence at the U.S. Capitol at the Family Conference in Washington, D.C. in 2017 – with your help! The more Helping Hands that volunteer, the better the future for our kids.
Join us! Together, we will and can make a difference.