It’s All in the Genes

Wow, there are other kids like me!

That is one of Kylie Reeder’s fondest memories of attending her first National Foundation for Ectodermal Dysplasias (NFED) Family Conference in 1996.  Kylie, her brother, and her mother had recently been diagnosed with hypohidrotic ectodermal dysplasia (HED). She plans to attend the Family Conference again this year with her daughter, Matilynn, and her husband, Matt. Her journey has come full circle.

HED has deep roots on Kylie’s maternal side of the family. Those roots now extend to Kylie’s daughter, Matilynn. She was diagnosed with HED recently at age two. Dr. Hunter sent Matilynn to Children’s Mercy Hospital in Kansas City, Mo., for testing.

Kylie’s brother, Kevin, made the same trip more than 20 years ago. Dr. Raymond Grote sent Kevin to be tested for HED after years of researching causes for Kevin’s symptoms of visibly thin hair, thin skin and few sweat glands.

Growing up with HED was not easy for Kylie. Body temperature control was her biggest challenge. Kylie had enough of her baby teeth to avoid dentures or implants. Her family developed ways to cope with HED daily.  Water spray bottles and frequent cooling breaks helped Kylie and her brother prevent overheating.

Similarly, Matilynn showed her first indications of HED during warmer months. Matilynn would cry in the car if the air conditioning was not turned on. After the medical experts at Children’s Mercy Hospital confirmed Kylie’s suspicions, she began planning her trip to the 2017 NFED Family Conference.

Emily, Kylie, Matt and Matilynn

A Future for Matilynn

Being a parent of a child with HED is different than learning about it as a child. – Kylie

Kylie hopes that the Conference will help her gain more insight into HED for her daughter Matilynn’s sake. Matt’s parents, Tracy Reeder and Jimmy Beaver will join Kylie, Matt, and Matilynn on their trip to the Family Conference this year.

Tracy and Jimmy recently adopted Emily, who is in the process of being tested for ectodermal dysplasia after the couple found out that Emily’s biological father has ectodermal dysplasia. Tracy, Jimmy, and Matt were not even aware of ectodermal dysplasia until Matt married Kylie. Tracy and Jimmy plan to learn as much as they can for their new daughter, Emily.

Kylie and her family look forward to the conference to meet their new friends, Harmony Pike and her son, Brycen. Harmony and Brycen, who has Goltz syndrome, are travelling from Alabama. Kylie first met Harmony on Facebook through Kylie’s aunt, a mutual acquaintance of both women. They shared their stories and discovered they were both planning to go to the 2017 Family Conference. Kylie could not believe her luck!

Kylie and her family would not have been able to attend the Family Conference without a scholarship from the NFED’s Bev Meier’s Golden Ticket Fund. Additionally, Kylie has planned a Car Show and Auction Benefit Fundraiser to help fund their trip.

Kylie can hardly contain her excitement for this year’s conference. So much effort has gone into the trip, she said.

Most importantly, Kylie has not walked the path of HED alone. She has had support from her family, her doctors and the NFED. Their support has made the conference a reality for the Reeder family.

With the 2017 Family Conference on the horizon, this summer is likely to be an unforgettable one for the Reeders!


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5 comments on “A Legacy of HED: Finding Answers for the Reeder Family”

  1. 1
    Kevin Turner on June 17, 2017

    Hi. Kevin Turner here. There are a lot of inaccuracies in this article. For starters, when I was born they put me under heat lamps because I was a bit jaundiced and it made me overheat and that is when they knew something was wrong. I was diagnosed as an infant and was born in 1991. Dr grote suspected the symptoms and Dr Wheeler confirmed. I cannot sweat, I have abnormally thick skin and nails and I only ever got 4 baby teeth all super sharp. 1 tooth had to be pulled and I got dentures when I was 7. Also, you as in the NFED foundation gave my dentist an award Dr David Detar of Joplin Missouri. Also I have the other basic symptoms such as super thin hair and dark circles around eyes and nose. Also, Emily has been Tracy and Jimmy’s child since infancy and they knew about ectodermal the entire time. I just felt clarification was needed.

    Thank you.

    1. 2
      Jodi Edgar Reinhardt on June 22, 2017

      Hi, Kevin. Thank you for sharing the information. I also emailed you. We apologize for any errors. We did have Tracy and Kylie review and approve the article before publication. I do remember us giving an award to Dr. DeTar. As I recall, your mother was really happy with the care he provided to you at the time. We hope you are doing well!

  2. 3
    Kylie Reeder on July 4, 2017

    I just want to say thank you for interviewing me & yes there may have been a few errors but I was 4 when my little brother was born. I did approve 🙂 Thank you Kevin for helping with your comment & I love the artical & interview went great. I look forward to the conference 🙂

  3. 4
    Emily Reeder on December 11, 2018

    Good article overall. It does have a few false details in the article but other than that this article is great. Thank you to the author of this article.

    1. 5
      Jodi Edgar Reinhardt on December 12, 2018

      Hi, Emily. We apologize for any details that are incorrect. We went with information that was provided to us. Please know our intent is always to be factual and accurate. Thanks for your understanding! Jodi, NFED, Director, Marketing and Communication

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