Rochester, MN (KTTC-TV) -- If you've never heard of CDLS, it's a syndrome that affects one in 10,000 people. And one family from Zumbrota is living with the syndrome every day.
Like any soon-to-be parents, Sarah and Christopher Schurke prepared themselves for a new life that would change their lives forever. But, they had to be ready for something more.
"At my 20 week ultrasound, they thought something was wrong," said Sarah Schurke.
Their first-born, Nicholas, would have CDLS, or Cornelia De Lange Syndrome.
Typical features include thin eyebrows, long eyelashes, a short upturned nose and thin, downturned lips. According to Nicholas' doctors, he as a moderate case of CDLS, but other kids aren't as lucky. Schurke says some are totally wheelchair bound.
One of the biggest things the Shurke's have needed most while raising Nicholas is patience.
"That's been frustrating, not being able to communicate with him," Shurke says. "He doesn't have a vocabulary, but he makes sounds."
Like any 4-year-old, Nicholas loves to play, explore and be his own person. Nicholas works with several therapists. And with their help and constant attention from his parents, he is making progress. So are health officials. Schurke says doctors have found a gene to detect the disease earlier.
But, Shurke says their also needs to be more awareness. "How many doctors are aware of this syndrome? Not many I think. When I bring him to a new doctor, it's usually the first time they've seen someone with this."
The Shurke's say they find support through the CDLS USA Foundation.