GREELEY, Colo.—Nic Sedam loves hanging out on “his” website watching videos of his friends.
But Nic’s website isn’t anything like the traditional social networking site most 14-year-olds use to connect with their friends. His tells his story of living with Wolf Hirschorn syndrome.
Wolf-Hirschorn syndrome is a rare condition caused by a deletion of the short arm of the fourth chromosome. The missing piece generally causes severe developmental delays, a distinct facial appearance, shortened stature and many other birth defects and health problems.
Many infants with WHS are stillborn or die shortly after birth. A third die by their first birthday, and most don’t live to 2. Of those who do live longer, most use breathing or feeding tubes and are nonverbal.
When Nic was diagnosed at 3 months, only 250 people in the world were known to be living with the condition. His parents were told to make the most of their time with him.
But Nic is different. His geneticist says he is writing his own book.
As far as Nic’s parents are aware, only one person in the United States, a 19-year-old in Indianapolis, lives a life like Nic—beating all the odds.
He walks, talks and eats on his own, and he plays on his dad’s iPhone while texting his friends with his own phone. He is currently in hunter education safety classes to make use of the .22 he got for Christmas, and he greets customers at his dad’s business when he’s not in school.
In fact, if Nic weren’t a mere 4-foot-2, and if he didn’t have the facial appearance of someone with WHS, many wouldn’t know he fights a syndrome that takes the life of nearly everyone who has it.
“Let’s not talk about that,” Nic says. “I don’t like to talk about that.”
He has no health problems and has not seen his geneticist—or any other doctor—in years, his parents said.
“They still have his blood in the lab,” Cathy Sedam said. “Every time they develop a new probe test, they use Nic’s blood because they want to know why he is the way he is. He is doing everything they said he would never do. And we’re loving every minute of it.”
Despite Nic’s success, he still has a long way to go. He can’t read or write proficiently, and he is intellectually behind.
Just don’t tell Nic that.
“Hey,” he says to his mother as he playfully and simultaneously strikes his hand with a fist at the mention that he can’t read or write. “Don’t say that. I can too.”
“You’re right,” she says. “You’re getting much better.”
And he is. Since Nic started at University Schools as a kindergartner, he has gone from needing someone with him 100 percent of the time to doing everything on his own. Until he was 3, he couldn’t speak. By first grade, he could ask simple questions. At second grade, he was speaking in complete sentences, writing letters and spelling some words.
Today, he changes classes like everyone else, going from math to science to social studies, and he has favorites like everyone else. “Mr. (Troy) Rivera,” he says loudly and proudly when asked who his favorite teacher is. Spaghetti is his favorite food, although Rocky Mountain oysters are a close second, and “science” is his favorite class, as he hopes to be a doctor someday.
Middle school has been more challenging, however, Nic’s father said.
“He wants to learn. He loves school. And we’re just trying to give Nic the education he deserves,” Dan Sedam said. “But it’s harder having so many different teachers.”
The special education department gave Nic a laptop with special software on it to help with his learning, but it’s been suggested that he would excel more at a different school.
“This is his school,” Dan said. “All of his friends are here. We just need to focus on life skills, getting him to the point where he could get on a bus by himself. I hope that in high school he can do the same things all the other students do with job shadowing and internships. There are jobs out there he can do.
“We know he will probably be in high school until he’s 21, but we want him to be a lot more independent. We just need to focus on the things he can do in life.”
Cathy said everything that happens from here on is just icing on the cake. From believing that Nic wouldn’t live to see his first birthday to knowing what he’s done, anything is possible now.
“I still don’t know what could happen,” she said. “The sky is the limit. I don’t ever see him hitting a road block anymore.”
Dan said he can see the determination in his eyes.
“Those wheels are turning all the time,” Dan said. “And that’s just awesome. It’s something new all the time.”
