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.
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!