Lancaster youth copes with rare medical condition

LANCASTER — When Mike Dube was 3, his doctors thought he had a wide range of food allergies.

It wasn’t until he was 8 that he was diagnosed with eosinophilic esophagitis, a condition that prevents him from eating most foods because his white blood cells mistake food for a virus.

Last summer, he was also diagnosed with Crohn’s disease of the esophagus, an inflammatory disease.

Now 14, the Nashoba Regional High School freshman said he’s glad he took a chance last month and revealed his condition to the whole school.

“Not too many people treated me different or thought I was weak; they just asked a lot of questions,” he said.

The consequences of his condition mean this fan of rough, high-impact sports has to eat most of his meals by dripping a special mix into a port installed in the skin on his stomach.

“Sometimes when you burp you can taste it,” said Dube.

Complications from his condition have caused him to take a break from playing sports. He has competed in wrestling, football, baseball, lacrosse and mixed martial arts.

He’s been absent more than 40 times this school year already because of complications, even though he looks like a healthy teenage on the surface.

During lunch period he gives himself a feeding in the nurse’s office.

When he started at Nashoba Regional High School last fall, he avoided going over to people’s houses out of a fear he would have to explain.

“I was thinking people might treat me differently when they found out … like, ‘He’s a cripple and he can’t do anything,'” said Dube.

In seventh grade his doctors realized how severe his condition was. He wasn’t growing and got sick a lot. The feeding tube was installed as a desperate measure because it’s such a life changer, explained his mother, Jodie Bell.

Dube said he still misses eating like he used to. It was especially hard at first.

“When my mom was cooking I would sit in the kitchen and just smell the food,” said Dube. He said he misses macaroni and cheese, and pizza the most.

He has found several foods he can safely eat. His condition is severe and he has to use trial and error to see what foods his body can tolerate. Each “food trial” takes 12 weeks of eating a single type of food. Some times there is a severe reaction and the trial is aborted. If he goes 12 weeks without symptoms his stomach is analyzed chemically to see if his body has any hidden problems with the food.

So far they have found out he can eat five foods safely: rice, potatoes, turkey, pork and apples. He may use salt, pepper, sugar and cinnamon.

He has severe reactions to beef, dairy, nuts, corn and sunflower seeds, which he said are often hidden in prepared foods.

Dube said he never tried bringing safe food with him to gatherings because it would stand out if he’s eating fried slices of sweet potato when everyone else is having pizza. He said eating nothing draws no attention.

The immune suppressants he takes have kept him from playing football this year. Dube said he hopes he can play high school lacrosse this spring.

J.J. Linn was Dube’s lacrosse coach last spring. Linn said Dube chose to play as a defenseman because it was a high-contact position.

“That was definitely something he enjoyed doing. He loved throwing his body out there and pushing off guys,” said Linn. “”He just had a knack for it. Mike definitely did not want to let his condition hinder him from enjoying sports.”

Linn said Dube couldn’t make it to every practice because of medical issues, but he never held back when he was on the field.

Curtis Ludden coached Dube three years ago when he played Leominster Youth Football. Ludden said at first the medical issues were minor and he didn’t worry about them, but as Dube’s condition progressed he always had concerns in the back of his mind.

“He’d say, ‘Don’t worry about it. I can do it. Let me go, let me play,’ ” said Ludden.

“He’s just a kid that doesn’t give up on anything. He has a heart of gold; it’s like he’s made of steel. He gave it all, every time,” said Ludden. “He just goes and goes and goes.”

Now that he’s taking a break from sports, Dube said he spends a lot of time on his computer. That includes playing video games and making money through web design and selling Minecraft modifications programs he’s created.

Dube said when he used to live in Leominster he dealt with some kids who made fun of his condition, although he said one student frequently labeled as a troublemaker and a bad seed said he would deal with anyone who gave Dube any problems.

When he moved to Lancaster this school year with a different group of classmates he thought it would be best if he just kept his condition secret. His sister Maddison, 16, goes to the same school and eventually told him it’s too much work and he should just spill it already.

That’s exactly what he did last month over Facebook.

“People always come up to me now and say, ‘I can’t believe how brave your brother is and how strong he is for doing what he did,’ ” she said.

Dube said above all else, he wants to be thought of as a normal kid.

– Michael Hartwell (source: Sentinel & Enterprise)