TROY, Mich. – Playing Nerf tag with his brother, 12-year-old Ethan Lawton, of Troy, Mich., looks healthy and strong. But on the inside, Ethan's body is in a constant battle.
He's suffering from a disorder that drastically restricts his diet and may eventually leave him unable to eat any food at all.
"From a few months old, we knew there were differences. He was sick, he had eczema from head to toe," said Melinda Miller, Ethan's mom.
At age one, Ethan was diagnosed with life-threatening allergies to dairy, eggs, peanuts and tree nuts.
Then in 2010, Ethan began refusing to eat.
"He started complaining of stomach aches," said Melinda. "He started not wanting to go out and play with friends, he just wanted to be inside."
Ethan had an endoscopy -- a test that allows doctors to look at the esophagus and stomach and take tissue samples. The diagnosis -- a condition called eosinophilic esophagitis or EE.
EE is a disease that causes the body to mistakenly think food is a foreign invader. The body responds by sending special kind of white blood cells to attack the proteins in the food and those cells in turn damage the tissue of the gastrointestinal tract. No one knows what causes it, and there's no cure.
"He's gone down to only being able to eat fresh fruits and vegetables and rice at one period in time," said Melinda. "It's heartbreaking when your kid just looks at you and says, 'Mommy, I don't want to hurt any more,' and there's nothing you can do about it."
They found a team of specialists at Children's Hospital of Cincinnati and a new medication that is helping Ethan. It's allowed him to eat meat, including his favorite, hamburgers.
But EE is a constant challenge.
"I can't have anything that everybody else can," said Ethan. "It's hard to watch other people eat stuff that you can't."
"He has been bullied at school about it," said Melinda. "It definitely points him out as someone different when you're very limited on what you can have."
Doctors say in the next year, Ethan may need to stop eating food entirely, and instead, live on a special formula he would receive through a feeding tube.
"He would have to be taken off all food for at least three months," said Melinda. "And then we can try and add back one food every three months. So it would be a very long process."
Facing that daunting challenge, Melinda stumbled onto another. She noticed a Facebook post about a team planning to climb Mount Kilimanjaro to help find a cure for EE.
"I called my father and said, 'Are you willing to do this if I am?' and he said, 'Sure.' And I came home and asked Ethan and we applied that day," said Melinda.
Next summer, Ethan, Melinda, and her father Duane will travel to Africa to climb Mount Kilimanjaro, more than 19,000 feet into the sky. It will be a challenge, both mentally and physically.
"I'm a little afraid of heights, so climbing the tallest free standing mountain is a little scary," said Melinda.
Their team includes ten other teens who have EE.
"I get to see a hope now that I'm not the only one with EE," said Ethan.
"I think it's just inspiring for these children who at some points in their lives can't get out of bed and are having procedure after procedure, and they are all willing and able and determined to climb this mountain in order to show the world that we can do anything we put our minds to," said Melinda.
Family needs help fundraising
Ethan, his mom, and grandfather will spend the next year training and holding fundraising events. Story continues on page 2 ...
Each adult has to raise $15,000 and each child needs to raise $2,500.
The proceeds will benefit CURED, a not-for-profit foundation dedicated to those suffering from eosinophilic disorders.
- To learn more about EE and other eosinophilic disorders, click here.
- To help Ethan's team reach their fundraising goal or to learn more about upcoming fundraising events, click here.