Heartland kids battle rare disease that causes weight gain - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

Heartland kids battle rare disease that causes weight gain

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Meet Reagann and Mason. These two children may seem like normal kids, but what they have is quite rare. Meet Reagann and Mason. These two children may seem like normal kids, but what they have is quite rare.
There are less than 100 kids worldwide that have been diagnosed. This disease can turn deadly and right now, there is no known cure. There are less than 100 kids worldwide that have been diagnosed. This disease can turn deadly and right now, there is no known cure.
Parents of Reagann and Mason have searched relentlessly for answers over the years, traveling many miles and seeing many specialists before being diagnosed with ROHHAD. Parents of Reagann and Mason have searched relentlessly for answers over the years, traveling many miles and seeing many specialists before being diagnosed with ROHHAD.
EAST PRAIRIE, MO (KFVS) -

Children in the Heartland are battling a new, rare disease.

Meet Reagann and Mason. These two children may seem like normal kids, but what they have is quite rare.

Both are diagnosed with a disease called ROHHAD. That is short for Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation presenting in childhood.

There are less than 100 kids worldwide that have been diagnosed. This disease can turn deadly and right now, there is no known cure.

Although a cure and advancements in medication are being researched, it is minimal thus far. Some symptoms are more obvious like weight gain and eye abnormalities. A variety of other symptoms may pop up as well including rising carbon dioxide levels, fluctuating sodium levels, altered sweating, fluctuating temperatures, and reduced lung function that leave most patients unable to breathe without the use of a ventilator.

Parents of Reagann and Mason have searched relentlessly for answers over the years, traveling many miles and seeing many specialists before being diagnosed with ROHHAD.

That is something Amy Henderson of Wickliffe, Kentucky knows all too well. Her son is Chance. He has similar symptoms as Reagann and Mason. Doctors are testing Chance for ROHHAD.

Chance and his family has been fighting for answers much like Reagann and Mason's family has been. After gaining roughly 40 pounds in a one year span seven years ago, Chance's family has since been on the search for answers. They feel confident ROHHAD may be the answer to what Chance may have.

Nonetheless, treatments are being studied and tested. One treatment offered to Reagann is an experimental chemo treatment in Baltimore. The family has decided to undergo the treatment next month. They hope this will be an answer to at least some of her troubles. Families of these three children want to let others know that ROHHAD exists. They feel that spreading awareness and raising funds is a must for research and to someday find some answers and cure this disastrous disease.

Before Reagann makes her trip to Baltimore, family and friends have set up a fundraiser on June 1 in East Prairie, Missouri called Reagann's Rowdy Day. This ROHHAD event is to raise funds and awareness of the disease.

Copyright 2013 KFVS. All rights reserved.

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