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Against all odds...
The persistent beeping sound emanating from the small piece of equipment drowned out the background noise as Brittanie Checketts chased a pair of kittens through her family's single-story home.
A shy but precocious five-year-old with short blonde hair and crystal blue eyes, she was determined to hold the one that seemed to be her favorite -- a tiny white kitten with Siamese markings.
The beeping, however, is a constant reminder that her life hangs in the balance.
Like others her age, Brittanie's fascination with Disney princesses and Tinkerbell is matched by her fondness for sidewalk chalk and board games. Most of the time, those playtime activities remain neatly stacked at the top of a cabinet in what used to be the family's dining room, which now serves as a bedroom for the youngster.
That makeshift living area includes a bed and multicolored floor lamp but lacks other amenities. There's not enough room. Equipment needed to keep the Checketts' youngest child alive takes up most of the remaining space with a basket full of medications kept close at hand to keep the child's condition from worsening.
For the first four years of her life, Brittanie was not much different than others her age. Her father, Paul, considered her a mischievous daredevil that had the occasional scuffle and altercation with her older brothers.
"She was a tough little kid; very tough," Paul said.
Shortly after her fourth birthday in May 2009, Brittanie's life changed drastically. By July, she was rapidly gaining weight, which at first didn't alarm her parents.
"We thought she was going through a growth spurt," Paul said.
But it got worse from there. She was constantly tired and seemed to sleep far too often. By August, her parents took her to the doctor "since she wasn't snapping out of it," said Carren, her mother.
Her doctor remained concerned and equally puzzled by the youngster's condition and continued to push for answers. Nothing seemed to improve the youngster's condition. In December, Brittanie contracted what looked like a persistent form of pneumonia.
"One night, we were just watching her, and she seemed like she wasn't breathing right," Paul said.
Alarmed, they took their daughter to the emergency room. Believing the problem stemmed from pneumonia, the doctors planned to send the family home, "but she just wasn't acting right," Paul said.
"When we were trying to feed her, she was acting like she was 'out of it.' Her eyes were going all over the place," Carren added.
Instead of going home, the family spent the next couple of weeks at St. Luke's Regional Medical Center in Boise and didn't come home until a day after Christmas. In January, they traveled to Salt Lake City to meet with specialists hoping to learn more about what was crippling their daughter.
"Everybody agreed that there was an underlying condition that was causing her to have the pneumonia," Carren said.
On Jan. 10, the family had a name for the condition that was crippling their daughter. It's known as ROHHAD syndrome, short for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation. A very rare syndrome afflicting small children, Brittanie was one of only 35 people worldwide known to have this condition when she was first diagnosed. Since then, that number has climbed to more than 70 as doctors learn more about this disorder.
"The biggest problem with ROHHAD is most of the kids before they are diagnosed are first misdiagnosed," Paul said. "Doctors don't know what it is or what's causing it, and it leaves them confused."
For now, the closest medical experts have gotten to a cause is a possible link between ROHHAD and sudden infant death syndrome, or SIDS. Doctors believe the underlying cause involves damage to the hypothalamus section of the brain. It regulates thirst, hunger, body temperature, water balance and blood pressure and links the body's nervous system to the endocrine system.
For now, it remains a potentially life threatening, incurable condition.
Every day, Brittanie deals with multiple complications requiring no less than eight different medications to keep her ailment in check.
"She doesn't regulate normal functions that our body handles automatically," Carren said. Her daughter's thyroid levels dropped while blood pressure levels skyrocketed. An unusual form of diabetes prevents her body from regulating her sodium intake that can cause her to go into seizures if it drops too low.
Brittanie also has an unusual form of sleep apnea where "her brain forgets to tell her to breathe," Carren said. She's also unable to breathe deep enough to remove all the excess levels of carbon dioxide from her lungs, which by itself can prove fatal.
While the family hopes for a breakthrough, their daughter's condition remains critical and unpredictable. On Jan. 26, Paul and Carren nearly lost their daughter when she went into full respiratory and cardiac arrest. It occurred while the family drove to Boise to see medical specialists. Brittanie and her sister, Cheyenne, were in the back seat of their family's car when things went wrong.
"I looked back at her, and she had her head down, which isn't unusual since she falls asleep in the car all the time," said Carren, who reached back to move her daughter's head to help her breathe a little easier. "I lifted her head up, and (her face) was completely blue... and her eyes were wide open," she added.
Brittanie had stopped breathing and remained without a pulse for nearly 18 minutes before doctors managed to revive her. Despite the lack of oxygen feeding her brain, doctors found no signs of permanent damage.
Medical experts credit her recovery on one unique aspect of her condition. Brittanie's body temperature had dropped around the same time she stopped breathing -- another side affect associated with ROHHAD. That condition likely protected her vital organs and saved her life, Paul said.
Not expecting the child to show any signs of recovery for days, Brittanie regained consciousness after just 12 hours.
"The doctors were amazed. They called her a miracle child," her father said.
However, those miracles are tempered by setbacks. Just before 3 a.m. Aug. 30, Brittanie went into seizures at home and again at the hospital, triggered by low sodium levels -- similar to a diabetic going into shock due to low blood sugar. After that, she spent another three weeks at St. Luke's in another battle against pneumonia.
In addition to all the other problems she's currently battling, Brittanie also faces the possibility of contracting a form of cancer associated with her unique condition.
Nearly 11 months since they learned the extent of their child's condition, the Checketts continue to deal with things day by day. Carren gave up her career to remain a stay-at-home mom. Paul has trouble sleeping at night. Their son, Jeff, struggles to come to terms with his sister's ailment.
Despite the challenges, they hope to make their child's life a little better. In January, the Checketts plan to hold a spaghetti feed and fundraiser in their daughter's honor at the Elk's Lodge, complete with live music and an auction. Proceeds from the event would not only help the family with its growing medical expenses but would also help raise awareness of their daughter's condition.
Despite her life-altering ailment, Brittanie remains a very active, independent child. It tends to surprise her therapists and physicians, Paul said. In fact, most children battling the same condition remain just as active.
But she does have her limitations. Her inability to clear her lungs of carbon dioxide requires Brittanie to remain permanently connected to a respirator. When she chooses, the youngster can switch to a portable respirator sitting in a small cart that she wheels through the house. It gives her a limited amount of mobility and some independence.
On occasion, Brittanie shows other signs of improvement. From time to time, her parents do see her smile "and acting like a child again," Carren said.