By Jill Radley
I found the NFED in 1992, upon the recommendation of my childhood dentist at the University of Minnesota. When I received the literature packets I had a light bulb moment. I looked at the pictures and I felt that I was looking in the mirror. It explained so much to me. I felt connected from the start.
Our son, Caleb, was born in 1995 after we went through genetic counseling because having a child was a big decision for my husband and I. We knew after 10 weeks into my pregnancy that our son was also affected – although less severely.
When he was born, the NFED provided lots of good advice to share with the hospital about skin care and keeping him out of the heat lamps. They have been there for us every step of the way!
We have had the opportunity to attend several Family Conferences over the years. My son asked, “Are these my cousins?” when we walked into our first conference and dropped him off in a room with other boys who looked just like him.
It was an amazing and emotional experience. We realized that – yes – we are part of something bigger and there are others like us. We are a family. The NFED has provided lots of resources for us as our son entered school.
These were invaluable to my son’s teachers and school personnel. We have used their publications with our local dentists and doctors. The NFED has been there for us every step of the way.
Caleb is a very healthy young man and can’t be held down or back. We are so proud of him. He does well in college. He plays bass guitar and sounds great, and he is a wrestler. To me, that is the most amazing sport.
Who would have thought my son would be a wrestler? He was even SE AZ Conference Champ in his weight class in 6th grade. He continued to wrestle in high school and now in College.
He manages his heat with a spray bottle and wet towel. He has earned the respect of his teammates, opponents and parents for his wrestling efforts. He has experienced teasing and has been called a “vampire.”
His hair earned him names like “cotton top” and “Q tip” – he doesn’t like that. But he does have the ability when he opens his mouth to win over most people with his awesome sense of humor and upbeat spirit. He has some good, solid friends who are more interested in who he is, and not notice what is different.
Life with ectodermal dysplasia has had challenges, but I feel it is also responsible for helping me become who I am and Caleb who he is. Yes, there are some things that we would change, to make our lives less difficult at times, but we wouldn’t want to change the essence of who we are.
I know that what makes us stronger sometimes is not a lot of fun, nor is it easy. I also know we are given what we can handle. We just need to find out how to navigate through this maze of life and embrace what we can do, not dwell on what we can’t do.
I love connecting on social media in the women’s group and the Arizona group of families and hope that connection with others will help them on their journey as well.
Why do I volunteer for the NFED? I am volunteering to make a difference and to give back to the NFED for all they have done for me, Caleb and my family. I hope that my story will encourage others to step up to the plate and volunteer for the NFED in some way or at least share your story! You do have a talent you can share with all of us and be part of the bigger picture.
Editor’s Note: Jill has served as a Family Liaison to families in Arizona since 2006. Jill lives in Thatcher, Az. with her husband, Howard. Jill and her son, Caleb, are affected by hypohidrotic ectodermal dysplasias.
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