You have the chance to make stories like Theo’s possible!
In the middle of the night, Theo’s mother Megan shook Theo’s dad awake.
“Nye, look at this,” she said, holding out her phone.
On the screen were pictures of children who looked just like their sweet one-year-old, Theo.
Following her instincts, Megan had been searching for answers. Why was Theo having high fevers that required trips to the hospital? Why did he struggle with constant respiratory issues? Why hadn’t a single tooth come in yet?
That night, Megan found the National Foundation for Ectodermal Dysplasias website. She read everything she could and realized she might have discovered what had been puzzling them for months: x-linked hypohidrotic ectodermal dysplasia (XLHED).
Fortunately, their pediatrician listened to the first-time parents and genetic testing confirmed it: Theo was indeed affected by XLHED.
Megan immediately joined the NFED. Within 24 hours, she received a call from Kelley on our staff who welcomed her, listened, answered her questions, and gave her hope.
“Your foundation has truly been a godsend during this time as we have begun to navigate this new world! We are so beyond grateful!” – Megan, Theo’s mom
“The unknown is what’s scariest for me,” Megan said. “Because when you know things, you can do things. The NFED’s support has brought us comfort during uncertain times and given us the strength to advocate for Theo’s needs.
As Theo grew and it was time for him to get dentures, Megan turned to the NFED’s list of care providers. Through that connection, they found a wonderful prosthodontist who took the time to truly get to know Theo and created an individualized treatment plan that met his unique medical and dental needs, while also treating him like the three-year-old he was. The process became not something to fear, but something exciting and empowering for Theo.
Today, Theo is a funny four-year-old who proudly wears his dentures every day.
“He jokes with his friends and takes out his teeth,” Megan laughs.
They took the NFED’s advice: don’t let the diagnosis define you. They’re more careful about the weather, but they don’t let it stop them from living their lives.
“Life is just normal,” Megan said. “We don’t talk about Theo. We talk with him. We want him to be resilient and empowered.”
This year, Megan and Nye got more involved with the NFED, attending their first Family Conference, which they called magical. They also shared their story at NFED’s Advocacy Day on Capitol Hill.
Their dream for Theo is simple: to live a happy, healthy life.
And Theo’s dream? To work in construction – no small feat for someone who can’t sweat.
The NFED exists to walk beside Theo, his parents and thousands of families like them every step of the way. We are the only organization in the United States dedicated to empowering families affected by ectodermal dysplasias.
Will you make a gift today to help families like Theo’s find hope, support, and answers? Give today for Theo’s tomorrow.
Your generosity makes it possible for parents like Megan and Nye to turn fear into knowledge. And for kids like Theo to grow up confident, capable and proud of who they are.
You can help us make tomorrow brighter TODAY!
Gratefully,
Greg Klimovitz
Executive Director
Mary Fete, M.S.N., R.N., C.C.M.
Retiring Executive Director
