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We all know how important sleep is, and how necessary it is for survival. When Fatih and John Stepic first brought home their little girl, they knew their would be sleepless nights, but they did not expect how things actually turned out.

When their daughter was born in 2008, they already had two sons. They were no strangers to raising children, so they knew that around the clock feedings and sleep adjustments were just a part of the job. In the first few months, they thought maybe it was normal, but by the time that she turned six months old, they realized something was wrong.

“By the time she was 6 months old, we knew something was definitely wrong,” Faith Stepic said. “Kaitlyn wasn’t sleeping. We weren’t sleeping. And even though we kept telling the doctors that she just wouldn’t sleep no matter what we tried, they kept telling us that nothing was wrong with her.”

When they brought up their concerns to the pediatrician, they suggested changing her feeding schedule and crying it out, neither of which worked.

“We tried everything. Nothing worked and we were so frustrated,” she said. “Something just wasn’t right and we had to find out what.”

At 8 months old, the little girl was tested for any disorders that may be inhibiting her sleep. What they found was that she had a disorder called Smith-Magenis Syndrome which is a chromosomal disorder that affects a small portion of the 17th chromosome.

“We didn’t do really well with the diagnosis,” Faith said, noting that Kaitlyn has also been diagnosed as autistic. “We love our pediatrician but he didn’t know anything about the syndrome. He did some research and put us in touch with PRISMS, an organization who helps families dealing with SMS.”

After scouring the internet they came up short. However, they kept digging and found that people with this disorder are typically very sleepy during the day, but have difficulty falling asleep. This is due to an inverted circadian rhythm, which causes her to awaken constantly throughout the night.

“While most of the medications we’ve tried have been able to help her fall asleep, we’ve yet to find anything that can keep her asleep,” John Stepic said. “That means she’s up almost every 20 minutes throughout the night. If we’re lucky, we might get an hour or two of sleep at a time.”

Sleeping is not the only symptom, though, as she also has difficulty with mobility and with speech, both of which she has had therapy to help her make her first steps, through the use of a backbrace.

While her parents admit it is a struggle at times, because their daughter is lucky to get a total of one hour of sleep per night total, they are happy to have a diagnosis and an understanding of their daughter’s condition.