Extremely rare genetic disease hits home for West Terre Haute

West Terre Haute man battling a rare disease

Posted: Mar. 17, 2019 9:53 PM
Updated: Mar. 17, 2019 10:47 PM

WEST TERRE HAUTE, Ind. (WTHI) -- About a year ago, Bobby Vallandingham was diagnosed with MNGIE, or mitochondrial neurogastrointestinal encephalopathy

"Crazy thing is when we got the results back I didn't even know what that was," Vallandingham said. "They came back and said you have this and I was like alright well at least we know what I have."

It's a rare genetic disease that affects mostly the digestive and nervous systems of the body.

According to the uU.S. National library of medicine, only about 70 people are reported to have MNGIE.

Now, Vallandingham, the head athletic trainer at West Vigo high school, is looking for a cure.

"As we've gone on I've become aware of how rare this disease is worldwide and how fast the progression can hit you with symptoms," he said. "So, it's been a little difficult dealing with this but then again to know you have so many people supporting you it just makes me want to push harder and get that cure or get better."

Sunday, the young men's club in West Terre Haute was packed full with friends, family and community members.

They were all there to raise money and awareness for this rare disease.

Karen Myers knows first hand what this disease can do.

She's watched her daughter go through this for the past 6 years.

"This community is like a family we want to help each other we want to give," Myers said. "I've been on homebound with my daughter for almost the last five months and I know I was not gonna miss this."

The West Terre Haute family is planning other events to raise money and awareness for this rare disease and for the Vallandingham family.

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