Moorhead woman raises awareness about disfiguring disorder
MOORHEAD — When you walk through the front door of the Teddy Bear House in north Moorhead chances are you'll be greeted by a swarm of pre-schoolers.
"What's your name?"
"Are you a teacher?"
"Darcy's our teacher!"
Darcy is Darcy Barry, the owner and teacher at the child care center, who corrals the seven children with a simple command, "Who wants to play with Play-Doh?!"
"Yeah!" they yell, almost in unison.
The children, who range in age from 2 to 5, sit down on miniature chairs surrounding a tiny table as Barry goes to the back room to pick up a huge glob of blue Play-Doh. As they start flattening and rolling the dough, Barry, who has owned and run Teddy Bear House since 1989, reflects on how much the children mean to her.
"I just love these kids! They react to me better than adults," she says.
Barry is referring to the reaction she gets from some people regarding the small bumps that cover her neck and other parts of her body. The bumps are the result of a genetic condition known as neurofibromatosis, which causes tumors to grow on nerves throughout the body. NF affects about 100,000 Americans, but remains relatively unknown to the general public.
Not only can the tumors cause disfigurement, they can become fatal if allowed to grow unchecked. Barry has undergone about a dozen surgeries to remove tumors that became too large and painful. She says about 90 percent of the time, the tumors will grow back. The condition is not contagious, yet people sometimes avoid being near her.
"Once my husband and I went into a hot tub at a hotel. There was a couple there with their child. As soon as we stepped in — boom — they got up and left. When we eventually left, we saw them go right back in," she says.
She says people stare at her and assume she has something they could catch.
"I tell people if it were contagious, as much as I hug these kids, a thousand kids would have it," she says, laughing, "If you see marks on me — just ask."
That's what the children do. Barry says they'll ask her why she has so many mosquito bites or if the bumps hurt.
"One child even told me, 'Darcy, you have the most beautiful butterfly on your neck,' " she says.
Barry says she'd love for the world to react to NF the way her day care kids have. That's one reason Barry is involved in a fundraising walk for NF on Sept. 11 in Moorhead. She's hoping the walk will help raise awareness about the condition and help those who have NF to see they're not alone and they shouldn't hide.
"You gotta have a voice. If I were to sit in the corner and worry about myself I wouldn't be here with these kids," she says.
But she didn't always feel that way. Barry was diagnosed at 18 after she started getting small brown spots and bumps on her skin. She thought it was some kind of allergic reaction to her cat. But when the doctor told her it was NF, she was scared, especially after he said NF was the condition that Joseph Merrick from the movie "The Elephant Man" suffered from. (In recent years, however, doctors have concluded that Merrick did not have NF, but Proteus Syndrome which is a much more rare and disfiguring condition.)
"I went to the movie right away and that's what I thought my future would be," she says.
Since her diagnosis, not only has Barry welcomed two generations of children into Teddy Bear House, she's gone on to get married, raise two children and welcome a few grandchildren. Despite her surgeries to remove occasional tumors, she says she's "pretty healthy." She doesn't even take a lot of medication, especially since there aren't medications to treat NF.
But Barry is hoping that could change, and events like the Sept. 11 walk will raise enough money for researchers to discover new treatments and medications. She says the walk is also a chance for people with NF to socialize with each other, be seen and help the world know people with NF exist.
Barry is serious about her advocacy; she isn't afraid to approach people in the grocery store who appear to have NF to let them know there are people in the community going through the same things. She also appeared before the Moorhead City Council to get Mayor Del Rae Williams to declare Sept. 11 Neurofibromatosis Awareness Day.
"Darcy's personal connection to NF brings this disease close to home," Williams says. "I know our City Council felt her passion, too."
Barry happens to be wearing a blue "Team Darcy" T-shirt that emphasizes her striking blue eyes more than her skin imperfections (and also just happens to match the kids' Play-Doh, which is now all over the floor). She knows that while she spends her days educating youngsters, her mission is also to educate the community about what it's like to live and thrive with NF.
"It's a journey. There are stepping stones," she says." You just have to step over those stepping stones and move on. I have NF. But it doesn't have me!"
If you go
What: Moorhead NF Walk
When: 11 a.m. Sept. 11
Where: Gooseberry Park
Registration: $20 day of the walk or at www.nfwalk.org
For more information about neurofibromatosis: visit Children's Tumor Foundation website at www.ctf.org