Four-Year-Old with ROHHAD Inspires Community

Four-Year-Old with ROHHAD Inspires Community

There is a rare disease—and I do mean rare because less than 100 people in the world have been diagnosed with it—and it has an uncommonly long name. Get ready for it:

Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation, and Autonomic Dysregulation, or more simply, ROHHAD.

The syndrome affects involuntary muscle movement, such as breathing, heartbeats, and blinking. Sadly, it affects children, including a four-year-old girl named Alayna Jacobs, featured on WMC Action News 5 last February.

Alayna’s parents knew something was very wrong when she suddenly, and over a very short period of time, gained 25 pounds. Her body temperature was abnormally low, and they noticed she had difficulty breathing at night.

As with all rare diseases, determining the diagnosis was difficult because the symptoms mimic a variety of other conditions.

One healthcare professional suggested Alayna had a virus, as well as an ear infection, but her mom knew better. The next morning, Alayna was flown to a nearby children’s hospital with a dangerously low body temperature.

There is no cure for ROHHAD, and children with this syndrome usually succumb to it by the age of 10.

Alayna’s mom is hoping she will be an outlier; she believes in her daughter’s ability to fight. In the meantime, researchers and scientists are looking for ways to slow the progression; however, they still aren’t sure whether ROHHAD has a genetic component.

If you are the parent of a child with ROHHAD, help is available. The organization ROHHAD Fight can provide you with information and resources.

If you have experiences with ROHHAD, we’d like to hear about them.

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.