Meet Our Families

Hunter(14), our oldest son, was diagnosed with hypohidrotic ectodermal dysplasia when he was six months old. After six terrifying months of high fevers, skin problems and numerous infections we finally found a doctor that could give us some answers. Even though I have ectodermal dysplasia (my parents were told that it was not genetic) it never dawned on us that Hunter could have the same thing. We since have had two other beautiful boys both affected by hypohidrotic ectodermal dysplasia as well; Kegan, age 11 and Kaelan, age 7. We have had to learn to deal with some limitations but all three boys are crazy about sports especially basketball! We have relied heavily on the NFED and have been so appreciative of the materials that they make so readily available to help us deal with everything from finding a good dentist to form letters helping explain the boys’needs to teachers and administrators. While the path lay before us has not been an easy one, we are confident that our boys will become strong, confident and caring young men because of the many trials that they face due to ED.

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