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Twin Brothers Fight MG Together

6:27 PM, Apr 18, 2012   |    comments
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ST. JOHNS COUNTY, Fla. -- Javier and Miguel Bermeo are twin brothers. The 12-year-olds stay busy working on their farm, taking care of chickens and rabbits. They scuba dive in both fresh and saltwater. They are also active in 4-H and participate in public speaking.

On top of all that, they both have Myasthenia Gravis, often referred to as MG.

It's a neuromuscular disease that weakens muscles. It's very rare for children to have it.

Javier explained, "MG affects every muscle in my body. My eye muscles can't hold my eyes open for a long period of time, so they kind of droop."

He also said, "I get leg pain, arm pain, and hand pain."

As infants, both boys were diagnosed with MG. Both suffered from muscle pain.

However, while both brothers had surgery at different stages of their lives, it was Miguel who started to improve.

"I've been in remission for five years, so I don't have to take medicine anymore," Miguel explained.

His father, William Bermeo remembered that Miguel "regained his appetite. So he's gained four inches and 40 pounds and he's gotten stronger."

So even while the boys are identical twins, MG has kept Javier from developing strong muscles and is a bit shorter and thinner than Miguel.

William and Ashley Bermeo, the boys' parents, said "It's pretty difficult" to see one son who is in remission and see the other still suffering with pain.

They are pulling through this as a family, educating and encouraging other families around the country who deal with MG. 

As for Miguel, he has stayed by his brother's side.

Miguel said, "I understand he's tired and all. So that he can rest, I'll do his chores and stuff like that."

Javier explained, "It's good to know I have someone who understands. It's good to know he's been through this too, and he knows what I'm dealing with as well."

If you research MG, you may see photos of the Bermeos, as well as articles about their story.  The Myasthenia Gravis Foundation of America literally made Javier and Miguel the poster children for MG, putting their sweet faces on posters. 

"It's kind of good because we're getting the word out," Javier stated.

This week the Bermeo family will participate in the 2nd Annual MG Walk in Jacksonville. The goal is to raise awareness and funding for treatments and a cure for MG.

"I'm going to take my wheelchair that the University of St. Augustine gave me because I can't walk more than a mile or my legs hurt very badly," Javier explained.

Miguel added that "If he gets tired, one of us could push him in the wheelchair."  

Their mother said, "I never sugar-coated anything because I wanted them to know that even though they have MG, they could still accomplish and do anything they want to."

Apparently, they're doing many things, possibly more activities than other young people do.

They scuba dive, raise animals, speak to groups, and are working toward a cure for a disease. It's a disease that is not strong enough to separate two brothers.

The MG Walk is this Sunday across the country. You can joing the Bermeo family at the Jakcsonville Landing. Check-in is at 9 a.m. and the walk is at 10 a.m. You can walk a one- or a three-mile route. Click here for more information.

First Coast News