Her symptoms stumped doctors for months.

Four-year-old Alayna Jacobs had rapidly gained weight, was having trouble breathing and her core body temperature was falling so low she turned blue – and no one could figure out why.

When medical professionals finally figured out her condition, they had to Google it to work out how to proceed.

This is because Alayna, from Ripley, Tennessee, has a syndrome so rare that only 75 other cases in the world have been diagnosed. 

It will likely kill her before she reaches age 10.

Tragic: Four-year-old Alayna Jacobs, from Ripley, Tennessee, was diagnosed with a rare condition that less than 100 people in the world have been diagnosed with

Alayna is battling a rare syndrome called ROHHAD, an acronym for the long name of rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation.

ROHHAD affects the part of the nervous system that controls involuntary actions, such as breathing or your heartbeat, as well as the endocrine system which produces hormones that regulate metabolism, growth and sleep.

Symptoms and side effects from ROHHAD can easily be mistaken for other conditions such as hyperthyroidism (when the thyroid gland under-produces certain important hormones) or Cushing’s syndrome, a condition during which the body is overexposed to the hormone cortisol.

‘It affects pretty much every part of her body. So when she is asleep, she doesn’t breathe at all,’ Chastity Jacobs, Alayna’s mother, told WMC.

‘Her heart rate can get down to 30 [beats per minute]. Her body temperature can be 89 as opposed to our 98.6.’ 

Normal body temperature is 98.6F, and a normal heart rate is 60 to 100 bpm. 

In May 2015, Alayna’s parents decided it was time to take her to the hospital. 

She had rapidly gained 25 pounds in just a three-month period; her finger nails and mouth were blue and her body temperature just 94.5F. 

Doctors told Alayna’s parents that it was a virus – an ear infection – and to follow up with primary care the next day.

Confusion: For months, doctors were stumped by Alayna’s condition. She had rapidly gained 25 pounds and her core body temperature would regularly drop very low

Devastating: When Alayna (pictured with her mother) was first diagnosed, doctors told her parents they knew nothing about the condition and had to print out information from Google

The next morning, Alayna’s core body temperature was 89F. Doctors sent Alayna by helicopter to Le Bonheur Children’s Hospital in Memphis. Hospital chaplains met the family and told them to prepare for the worst. 

Chastity said: ‘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.’


ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD).

It affects the autonomic nervous system (the part of the nervous system that controls involuntary actions) and the endocrine system.

Scientists suspect the condition is genetic but are still unsure.

The disease is incredibly rare, and less than 100 people in the world have been diagnosed with it. 

Signs and Symptoms:

  • Dramatic weight gain over a six to 12-month period
  • Hypothalamic dysfunction, such as inability to maintain normal water balance in the body or hypothyroidism
  • Dysregulation of the autonomic nervous system, such as inability to regulate body temperature, slow heartbeat and excessive sweating
  • Alveolar hypoventilation (insufficient ventilation) with very shallow breathing during sleep

There is currently no cure for ROHHAD. Because ROHHAD can affect many different parts of the body, children are often cared for by a team of healthcare providers from various fields.

Alayna wasn’t expected to survive the night, but did. Now, a year and a half later, both her parents and her doctors are still trying to understand this rare syndrome. 

‘They literally walked in and handed me something that they printed from Google,’ Chastity said.

‘And they 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”.’

Alayna is only the 76th person in the world to be diagnosed with ROHHAD and currently requires a ventilator and an oxygen tank to survive. 

‘We weren’t medically trained, because we didn’t know what to look for. I hope other parents can fight for this,’ Chastity said.

Alayna receives the daily help of multiple at-home nurses, a team of doctors, and family and friends, but, because there is no cure, doctors have diagnosed her the condition as terminal.

The life expectancy for those with ROHHAD is just 10 years.

Chastity said: ‘We’ve been told so many times that she wouldn’t make it through the night, she wouldn’t make it through the week. I have seen her blue over 100 times, but she’s a fighter. If anybody can beat it, Alayna can.’

Currently, doctors say there are no tests to determine if a child will develop ROHHAD.

But researchers are looking for a possible genetic cause of the condition, and searching for ways to slow the progression of the disease or the severity of the symptoms.

Sad: Alayna is taken care of  by a wide-ranging medical team at home and uses a ventilator and oxygen tank. She is unlikely to live past her 10th birthday