Emily Brubaker with her two friends

By Brian Brubaker

 

Overheating hasn’t been something that Kindergartner Emily Rose Brubaker has had to deal with very much so far growing up in Alaska.

Normally in Alaska, hyp-O-thermia is much more common that hyp-ER-thermia.

But in the middle of the Alaska winter, when the Iditarod sled dog race is about to start, the Anchorage Fur Rendezvous is on, the days are short, the temps are low, the snow is deep, the wind is blowing, and cabin fever is at its worst – what better time to raise money for the National Foundation for Ectodermal Dysplasias (NFED)?

Emily and we as her parents attended her first NFED Family Conference in Summer 2016 in St. Louis.  The help and support of the NFED and the whole NFED community have helped her and us enormously, especially this past year: from tips for her first dental work, to how to make a 504 plan for her first day of school, to just having people to talk to who know what’s up.  So we wanted to pay it forward!

Emily’s local family and friends and her church family at the First Christian Church (Disciples of Christ) in Anchorage give her a lot of love and support.  They know she is a special girl.

They also know that hypohidrotic ectodermal dysplasia is hard to pronounce, is nothing to be shy about, and is just one more thing that is special about her.  They turned out to show their support and learn more about the NFED and ectodermal dysplasias by eating one of Emily’s favorite foods (PANCAKES), served up by the church’s men’s fellowship and slathered in some great homemade maple syrup sent in by her grandma in the Lower 48.  Plus there was a great game of “pin the smile on the princess”!

Emily thrived and we had a blast as well as her supporters.

Brian Brubaker

 

 

(Brian Brubaker is a guest blogger for the NFED. He is the father to Emily, who is affected by hypohidrotic ectodermal dysplasia.)

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