Boys affected by incontinentia pigmenti typically do not survive pregnancy. The condition is an X-linked dominant “lethal” condition. Meet Jamistyn, a 6-year-old boy with IP who not only survived but is thriving! Read more about his extremely rare story!
I Wanna Ask Santa for Teeth
Seeing a friend’s teeth, 3-year-old Kannon decides he’ll ask Santa for the teeth he hasn’t developed. Dr. Karen McAndrew steps in to make his first denture and his wish come true.
Talented Gymnast Overcomes Goltz Challenges
Jordan Buerman is an anomaly in the sport of gymnastics. Not only does she have Goltz syndrome, she only has one foot and limited vision! Find out how this gymnast not only competes but at a state level!
Wonderfully Rare
Kelly and Eric Koch became first-time parents when they welcomed a beautiful healthy girl named Clara. When sweet Clara’s baby teeth erupted and were shaped differently, the Kochs started on a long and humbling journey to understand why. The answer is a diagnosis that is one of the rare of the rare. Kelly bares her heart as she shares her journey as a new mom.
Blessed On A Sunny Day
Lily’s symptoms turned Alexus Abney and her fiancé’s lives upside down. However, this sweet baby has been a blessing to their lives in many different ways.
The Most Beautiful Sight
The Stollers spent the first few years of their daughter, Kambree’s life, trying to figure out what was causing all of her different, possibly unrelated, symptoms. When Kambree was finally diagnosed with ectodermal dysplasia, professionals and genetic testing couldn’t pinpoint which type she might have. Until an NFED Family Conference changed their life. They found something they didn’t realize they were seeking.
Life in a Raindrop
Elizabeth Hoverman has an extraordinary talent for perceiving color and expressing herself through beautiful art. Her photography has won contests and was recently celebrated during Rare Disease Week on Capitol Hill. Affected by EEC syndrome, this artist invites you to look beyond the surface – of her art and her syndrome.
The NFED Family Rises Up for Rare
It’s Ectodermal Dysplasia Awareness Month, and we’re sharing a few stories of hope that have stuck with us. Revisit stories from those who’ve risen above the diagnosis to help and inspire others.