Heartland kids battle rare disease that causes weight gain - KLTV.com - Tyler, Longview, Jacksonville |ETX News

Heartland kids battle rare disease that causes weight gain

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.

  • NewsMore>>

  • Sports WebXtra: UT-Tyler hosts special Olympics

    Sports WebXtra: UT-Tyler hosts special Olympics

    Tuesday, March 28 2017 12:13 AM EDT2017-03-28 04:13:30 GMT
    UT-Tyler athletics hosting special olympics on Monday night.UT-Tyler athletics hosting special olympics on Monday night.

    The UT-Tyler Student Athlete Advisory Committee hosted its second annual special Olympics with swoop on Monday night. Numerous Patriot athletes took time out of their normal practice and school routine to participate in the event and give kids a night of fun they normally don't experience.

    More >>

    The UT-Tyler Student Athlete Advisory Committee hosted its second annual special Olympics with swoop on Monday night. Numerous Patriot athletes took time out of their normal practice and school routine to participate in the event and give kids a night of fun they normally don't experience.

    More >>
  • Chapel Hill officially hires Jason Hooker

    Chapel Hill officially hires Jason Hooker

    Tuesday, March 28 2017 12:08 AM EDT2017-03-28 04:08:51 GMT
    Jason Hook officially hired at Chapel Hill.Jason Hook officially hired at Chapel Hill.

    A new era of Chapel Hill football will begin this fall. Jason Hooker's hiring became official at Monday night's CHISD board meeting. Hooker, who comes over from Brownsboro, is replacing Thomas Sitton as head coach and athletic director.

    More >>

    A new era of Chapel Hill football will begin this fall. Jason Hooker's hiring became official at Monday night's CHISD board meeting. Hooker, who comes over from Brownsboro, is replacing Thomas Sitton as head coach and athletic director.

    More >>
  • Sports WebXtra: Blake Lynch impressing during Baylor spring practices

    Sports WebXtra: Blake Lynch impressing during Baylor spring practices

    Tuesday, March 28 2017 12:02 AM EDT2017-03-28 04:02:09 GMT
    Matt Rhule is excited about Lynch's progress.Matt Rhule is excited about Lynch's progress.

    Former Baylor standouts Mount Pleasant product KD Cannon and Linden-Kildare native Shock Linwood will get their chance on April 5th to workout in front of NFL scouts and personnel during the Bears Pro Day. In the meantime, new head coach Matt Rhule is trying to lay the foundation of a program that can compete for a Big 12 title in 2017

    More >>

    Former Baylor standouts Mount Pleasant product KD Cannon and Linden-Kildare native Shock Linwood will get their chance on April 5th to workout in front of NFL scouts and personnel during the Bears Pro Day. In the meantime, new head coach Matt Rhule is trying to lay the foundation of a program that can compete for a Big 12 title in 2017

    More >>
Powered by Frankly