As you may well know, February is Ectodermal Dysplasias Awareness Month. We wanted to keep our celebrations going this month by sharing a few special stories from members of the National Foundation for Ectodermal Dysplasias (NFED) family. The stories that inspire us the most come from those who have risen above the diagnosis, embraced differences and spread love and community.
Maddie, Nora, Noah, Cyprian, Owen and their families are all affected by ectodermal dysplasias. But they’re not letting that keep them down. These heroes choose to see the beauty, individuality and strength that the conditions give them. Can’t you?
Marching on After Diagnosis
Jonathan sprung into action after learning about ectodermal dysplasias through his daughter’s diagnosis and the NFED. He and his family fundraise and advocate for all those with ectodermal dysplasias. They want to make life easier for kids diagnosed in the future.
“We’ll never forget the sense of empowerment we all felt when we met with our senators and representative to advocate for legislation to support dental care for those affected by ectodermal dysplasias.”
First in Our Family
Ashley was heartbroken when she first heard about her daughter Nora’s hypohidrotic ectodermal dysplasia (HED) diagnosis . But now, she sees it as a blessing that sets her apart from other kids and prepares her to be a great future dentist!
“I pray one day she will realize just how beautiful she is and be able to see her diagnosis as a blessing instead of a curse. I pray one day she realizes just how beautiful she is and that God made her exactly that way for a purpose.”
Our Special Grandson
Noah is a strong, special, and loved little guy. He has ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome and a squad of grandparents, parents and siblings who love him dearly in his corner. What a lucky kid!
“We have just begun this journey with Noah, and it will be life long. He is our sixth grandchild, and the only one with this genetic issue. He is loved so much and it grows every day.”
Be Cool to Oneself
Cyprian reps the NFED family in Zambia. In his school days, he developed a thick skin to brush off bullies who teased him for being different. Now, his self-confidence is up, and he wants to help others with ectodermal dysplasias learn to love themselves as well.
“Being born with hypohidrotic ectodermal dysplasia (HED), I have taken time to fully accept myself. I was born like this. I have to love my life.”
The Road Less Traveled
Owen’s first year was a tough one for him and his family, finding their feet after a hypohydrotic ectodermal dysplasia diagnosis. But it made them stronger, and with the support of the whole NFED family behind them, they know they can conquer whatever curveballs HED throws their way.
“Owen is our fighter and proves time and time again that he will beat anything that stands in his way.”
Learning about the diagnosis of a rare disease for you or your child is never easy. And that’s why we applaud all of our NFED family members who take in the news with a can-do attitude and big dreams for a better future. Your stories fill us with hope and drive our mission at NFED forward.What ectodermal dysplasias stories have inspired you or your loved ones? Have a story to share? We’d love to hear it.