By David Reidenouer
We had never heard of ectodermal dysplasia, let alone of the National Foundation for Ectodermal Dysplasias (NFED) until the moment our grandson, Nikko, was diagnosed at the age of two when he didn’t develop teeth and kept overheating.
Nikko had sweat issues, nasal discharge and was very sensitive to sunlight. We were taken aback since nobody in our family has ectodermal dysplasia that we are aware of. As soon as we learned our grandson had this condition, we did a lot of internet searching looking for answers and found the NFED.
Their website was full of valuable information, lots of articles, answers to our many questions, and it was easy to follow. We called the NFED and received a packet with even more information.
That’s when my brother, Paul, and I decided to attend the 2019 Family Conference in Chicago, Illinois which was listed on the website and in the packet. We felt the need to become better informed and learn as much as we could to take back to our family in New York, especially to Nikko’s mom and dad. We are a close family so this is a family affair.
Nikko, being almost four years old, has a long road ahead of him in adjusting to this genetic disorder and will need a support team. He loves dinosaurs, playing with puzzles and anything with an engine. Nikko is outgoing and spunky.
He is your typical active toddler. We, as a family, and our close friends will make up that support team. Paul and I decided to help by asking anyone with a business to donate by taking out an ad in the Family Conference program booklet or by being a sponsor.
This was our first attempt of being supportive to the NFED, who has given us so much already. They are a no BS organization. They are very knowledgeable and actually help people. They gave us answers to the many questions and we know they will be there for many years to come as Nikko grows up!
What Conference Taught Us
With the Conference only lasting a few days, we saw families rallying around each other, families jumping in to assist wherever there was a need, without being asked. We talked with families that were relieved to finally get answers and a sense of direction moving forward for their child and adults who never knew the condition they had until just recently.
We made numerous excellent contacts and learned from professionals as well as families, the good and the bad experiences with the disorder. We were extremely impressed by the advocacy efforts dealing with insurance companies. We would love to be a part of pushing the Ensuring Lasting Smiles Act (ELSA) through.
But what really struck us when we first arrived was that we saw kids that looked like Nikko. And, because of that, we are looking forward to Nikko and his family attending the Conference with us in 2020. We saw firsthand that we are not alone.
Meeting the Experts
We were so impressed by the speakers, doctors, dentists and the families, but most of all the children and teens. The Family Conference was a WOW moment for both of us!
Paul had the pleasure of chaperoning the field trips and getting to know and talking with the teens who are living with ectodermal dysplasia. That was such a great experience.
One of the adult chaperones had ectodermal dysplasia, came to many conferences as a child and is now giving back to the NFED by being a role model to these youngsters. This was tremendously inspirational. WOW.
This Family Conference showed us how important the volunteers are to the staff at the NFED. The NFED is not an organization with a huge staff and not with an overbearing payroll.
There is no doubt that the staff works an overabundance of tireless hours for the families of the NFED but they can’t possibly do all that is needed without the help of the NFED family of volunteers. We are extremely proud to be a part of that family.
Our First Fundraiser
We felt the need to get involved even more than working the promotional items table, being a microphone runner during sessions, and being a chaperone on field trips. Our family decided to hold a fundraiser in September which generated more than $9,000 for the NFED: a hot dog/hamburger bon-fire day.
Our family donated two brand new 65” smart TVs and a bicycle for the raffle and raise awareness about Nikko, NFED and ectodermal dyplasias beyond belief. The support was overwhelming in the community.
We have another event scheduled for Saturday June 27, 2020, which will be even bigger and better. We hope to have some NFED families attend as well.
Learn. Live. Have fun.
The one piece of advice that we have for other families affected by ectodermal dysplasias is to learn, learn, learn. Educate yourself and your child to live, live, live and have fun, fun, fun.
Parents with family and friends are the best advocates. GET INVOLVED. GIVE BACK TO THE NFED. Their tagline says: Supporting you! Supporting each other! That is not a joke.
The NFED has been there for our family and will be for your family as well. Let’s give back by stepping up and helping out.
We have a long road ahead because Nikko is not yet in school but we know that with everyone’s support, he will be okay! We are thankful and grateful for the NFED and the families we met at the Family Conference and feel part of a wonderful, caring, and inspiring group of people.
We will attend the 2020 Family Conference and once again, will be one of the sponsors. We are looking forward to it, seeing the families again and hearing about their progress over the past year. We look forward to meeting the new families that will be joining the NFED family for the first time.
David Reidenouer is a guest blogger for the NFED. He lives in New York with his wife, Kathy. They have a grandson, Nikko, who is affected by ectodermal dysplasia. We also thank Paul Reidenouer for contributing to the blog as well.