Eduardo shares his heart wrenching story to find help for his precious daughter, Arantxa. Born with incontinentia pigmenti in a country where doctors are not familiar with the condition, the sweet little girl faces extraordinary challenges. It’s a story of a family fighting against all odds to save their baby and a father sharing his emotional journey.
Two-Year-Old Struggles to Eat With Just one Tooth
Jackson is 2 years old, and he’s hungry all the time. He wants to eat. But chewing is just too difficult for him, and he struggles to eat every day. Read how his parents are coping with meal time and helping their toddler who’s affected by x-linked hypohidrotic ectodermal dysplasia. Plus, download our new medical article, Feeding Solid Food to Children Without Teeth.
4-Year-Old Wants to Bite Something With His New Dentures
It took years for a South Carolina family to find a dentist to make dentures for their son. Getting Beau to wear them was their next challenge. Read how strawberry Twizzlers made all the difference.
Longing for a Community of People Who Understand
Nicholle was searching for someone who understood what it’s like to always smile with your lips closed so people don’t see your missing teeth. Who know how frustrating it is to visit dentist after dentist trying to find someone who actually wants to treat you. Were there adults out there who know the pressure of trying to find more than $30,000 just so you can have teeth to bite into chicken with? Read her story to learn about her search and how she’s relieved to no longer feel so alone.
Caring for Our HED Baby Down Under
Our story of parenting our son, Ruben, during his first year is one of instinct and intuition, as we didn’t know until 16 months that Ruben’s collection of features amounted to something called hypohidrotic ectodermal dysplasia (HED). There’s no known ectodermal dysplasia in our families. We’d been asking all the right questions about our fluffy-haired, dry-skinned, hot-bodied babe, but it wasn’t until I mentioned our son’s toothlessness to his older brother’s dentist, that an answer was offered.
Unreliable Electricity Makes It Hard to Stay Cool in Cuba
Liliett Alarcon’s home in Cuba is filled with the joyful sounds of Caribbean music when her son is playing his drum set. But the Caribbean weather—very hot and very humid—can be tough at times for Manuel since he doesn’t sweat. Learn how Manuel is coping and how his mom. doctors and community support him.
Raising a Strong Daughter with HED
Leah Steenson was worried and scared when her daughter was diagnosed with ectodermal dysplasia but that all changed when she found the NFED. Find out how she’s teaching her happy kindergartener to speak up for herself and explain her condition.
To Know Katherine is To Know Joy
Jodi Watts’ days as a stay-at-home mom with a baby with Goltz syndrome were filled with appointments to attend to Katherine’s many needs. The fiesty little toddler faces many challenges but continues to thrive. Find out what her parents have learned, the life-changing conference they attended, and the dreams they have for Katherine.