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Alayna Jacobs had a happy, healthy childhood – until she turned four, and her parents began to notice strange symptoms ravaging their daughter’s health.
When Alayna was sleeping, she would barely be breathing. Her heartrate would fall as low as 30 beats per minute, and her body temperature would also drop to about 89 degrees Fahrenheit, as opposed to the normal 60 to 100 beats per minute and a 98.6-degree temperature.
When these symptoms failed to pass, and only seemed to bring on new ones – like a 25-pound weight gain in three months – the Jacobs parents decided to bring their daughter to the hospital.
The doctors were able to see, first hand, how the girl’s fingernails turned blue and her body temperature hovered at around 94.5 degrees.
Initially, doctors thought Alayna’s symptoms were caused by an ear infection, so they simply told her parents to take her back home and check back in the next day if the symptoms persisted.
Alayna’s body temperature only plummeted even more, until it was 89 degrees.
She was sent to the nearest hospital where chaplains greeted the Jacobs and warned them to prepare for the worst.
Mother, Chastity, recalled, “We were just devastated. We had a perfectly normal child the day before, and now our child is dying and we had no clue why.”
The hospital staff didn’t think Alayna would make it through the night, but she managed to pull through, giving doctors a little more time to attempt to diagnose her condition.
Chastity still remembers the sight of the doctors walking toward her and her husband with, literally, handouts that had been printed out from Google. Alayna’s condition was so rare, only 75 cases had been reported before.
The doctors had to turn to Google because they hadn’t had any experience with this medical condition in the past, ever before.
Alayna was diagnosed with ROHHAD, rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation. ROHHAD affects the portion of the nervous system that controls involuntary actions, like breathing and hormones that help regulate sleep, growth, and metabolism. This was what was causing Alayna to stop breathing and gain so much weight, especially as she slept.
But even though doctors were able to Google a diagnosis, they weren’t able to find a cure.
Chastity described, “And [the doctors] say, "We don't know anything". I mean, they were honest. They said, ‘We have never heard of this before. St Jude had never heard of this before.’”
In light of this troubled diagnosis and treatment, the hospital’s medical team has sent a team of nurses and doctors home with Alayna to provide her with daily help to get through each day.
Alayna’s parents are hoping that these medical professionals can at least provide their daughter with some comfort, so she will be able to enjoy the life she has before she passes away (likely before her tenth birthday).
Researchers are currently searching for a treatment or cure to this condition, but until then, the Jacobs family is hoping that their little Alayna will prove herself to be a fighter and outlive even the doctors’ best estimates.
