Pray for Alayna Jacobs - Innocent 4-year-old suffers deadly illness

'It affects pretty much every part of her body.'

Four-year-old Alayna Jacobs is a beautiful little girl who manages to smile despite countless doctor visits and a mystery condition that leaves her so cold she turns blue, has breathing problems and has rapidly gained weight.

LOS ANGELES, CA (Catholic Online) - Countless doctors visits and tragic symptoms threatened to steal Alayna's smile but somehow, amid breathing tubes and medical equipment, the little girl soldiers through and manages to find happiness.

Her mother, Chastity Jacobs, explained her daughter suddenly gained 25 pounds within only three months. One night, they found her fingernails and mouth blue and her temperature was was only 94.5 degrees.

The average healthy body temperature is 98.6. Alayna was rushed to the hospital where she was told: "Oh, it's a virus. It's an ear infection. Follow up with primary care tomorrow," Jacobs shared.

The next morning, Alayna was 89 degrees. She was sent by helicopter to Le Bohneur Children's Hospital where the chaplains spoke to the family and shared heartbreaking news.

Alayna suffers from an extremely rare syndrome called ROHHAD, or the rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation.

ROHHAD affects the section of the nervous system that controls involuntary actions, such as breathing or a heartbeat. It also controls the endocrine system, which regulates metabolism, growth and sleep.

Jacobs shared: "It affects pretty much every part of her body. So when she is asleep, she doesn't breathe at all. Her heart rate can get down to 30. Her body temperature can be 89 as opposed to our 98.6."

There are only 75 other cases that have ever been diagnosed in the world and doctors she was taken to previously just didn't have the knowledge to correctly diagnose her.

Unfortunately, once doctors finally pinpointed what was wrong, they had very serious news.

"They literally walked in and handed me something that they printed from Google," Jacobs shared. "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."

Then they admitted sweet little Alayna would likely pass by the time she reaches 10-years-old.

"We weren't medically trained because we didn't know what to look for," Jacobs admitted. "I hope other parents can fight this. 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."

Doctors reported there are no tests to see if a child is at risk of developing ROHHAD. Researchers are still looking for the genetic cause and ways to slow its progression or even to decrease the severity of the symptoms but no new information is available.

Scientists believe the condition may be genetic but their investigations continue. There is currently no cure for ROHHAD.

Please pray Alayna is healed, in the name of Jesus Christ, who died for our sins and showers us in grace, peace and mercy.

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