Wesley Chapel boy learns to live without solid food managing a rare disease while living normally

Local boy says he survives on nutritional shakes

LAND O' LAKES, Fla. - A Wesley Chapel boy with a rare condition has spent the last eight years unable to do the one thing we have to do to live.  Eat food.

It's lunch time at Pineview Middle School in Land O Lakes.

The 7th graders all hop up to get food, leaving Remington Walls behind with what looks like only a juice box in hand.  "It's like a nutrition shake that comes in a few flavors, but I only drink one."

One flavor, 12 to 16 times a day.  A mini-fridge in school must stay stocked full of these boxes. 

Remington may look like a healthy 12-year-old, but he can't eat solid food.  No pizza, no Doritos -- definitely no school lunch.  When he does, "I cough a lot, and sometimes I vomit.  I get really sick."

I first met Remington when he was only four years old.  He was going through tests to figure out why.  His mother Stephanie finally got a diagnosis. "Remington has Eosinophilic Esophagitis. It's also known as EE.  Basically he's allergic to all foods."

Since his diagnosis, he's tried different foods, but they've damaged his esophagus. His mom says, "There's not a cure and we're still going down a long road. We still don't know what his prognosis is."

Remington just wants to stay off a feeding tube, so he can play ball and be the Pineview mascot.  But that probably means a food-free world forever.

How does he stay away from that pizza or birthday cake?  "Sometimes I just don't look at it."

So, in the dark at first, mom wants the world to know this rare disease can be managed.  And kids like Rem can lead a mostly normal life.

We asked him what he would say to other kids who might have a medical condition that takes managing. "No matter what you have, you can still do whatever you want."

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