BROOMFIELD - Two young brothers from Broomfield have a secret device under their shirts that many of their classmates have no idea about.
They suffer from a rare disease that affects what they eat and how they can digest food.
Jake and Carson Organ are sharing their story to dispel myths about feeding tubes and to show people how their hidden MIC-KEY* tubes work.
The two brothers have a device sticking out of their skin.
They attach a tube to it and the formula they pour in goes directly into their stomachs giving them all the nutrients they need.
"It's making my life way more better and easier," 8 year-old Carson said.
"I'm really glad they actually made these because they kind of saved our lives," 10-year-old Jake said.
Their story started a few years ago when a doctor ran tests to find out why they got sick and felt pain after eating.
"He told me he had this disease, eosinophilic esophagitis," Chanda Organ, the boys' mother, said.
EoE is a rare auto-immune disease that's hereditary.
"The white blood cells attack foods, thinking it's a parasite that's there to damage the body," Chanda explained.
The attack is painful and causes inflammation in the esophagus.
Carson was fist to be diagnosed with EoE at the age of 2, then Jake's diagnosis came shortly after.
"When Jake was 6-and-a-half it exploded, he was sick, missing schools, unable to eat, on the floor just in tears. This is what we've been dealt with, and I can either take it or leave it, and fight it, so that's what we do," Chanda said.
Jake was given a feeding tube that stuck out and limited his physical activity.
Recently, both brothers went through a procedure to get a silicone device called a MIC-KEY* gastrostomy-tube.
"He has kids in his class that still don't know he has a tube, that helps him feel normal and look normal," Chanda said.
"I'm doing great now. I'm getting used to my tube now," Carson said.
"I totally forget about it during the football games," Jake added.
Both boys can play sports with their tubes.
They want to give hope to other kids who are limited by the disease, or have cumbersome feeding tubes.
"Don't think your life is over and you can't do anything," Jake said.
"I'm proud of them, they could choose to sit at home and be sick or they could choose to be out there and be kids," Chanda said.
The boys are able to eat a handful of regular foods as well, but only those that won't attack their esophagus.
It's a long-term trial and error process, and an expensive one.
At $80 a day for the formula for the two boys, fighting their disease costs tens of thousands of dollars a year.
"I really want to get it out and eat like the other kids but I just have to deal with it for now," Jake said.
"They show me so much strength. We do have our bad times, we cry, but they're strong, they're amazing to me," Chanda said.
So far, Jake has found 15 foods his body agrees with and Carson has discovered just five.
Once each of the boys finds about two dozen foods they can eat, Doctors say they won't need the tubes anymore.
At this rate, they could have the tubes out in a few years.
There are only four hospitals in the country that treat kids with EoE and The Children's Hospital in Denver is one of them.
For more information on EoE, go to www.apfed.org.
For details on a support group in Colorado, go to www.eoscolorado.org
The family has posted their story in numerous youtube videos, which you can find here: www.youtube.com/results?search_query=seetsjakers&aq=f
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