All About Multiple Sclerosis

More MS news articles for March 2004

Youth, family navigate complex disease

It's rare to find children suffering from multiple sclerosis -- but a 6-year-old Coral Gables boy is living with the disease

http://www.miami.com/mld/miamiherald/news/local/states/florida/counties/miami-dade/cities_neighborhoods/south/8234425.htm

Sun, Mar. 21, 2004
Nathalie Gouillou
The Miami Herald

Swaying from side to side, his tiny hands gripping an armchair, 6-year-old Gabriel Gonzalez shyly asks his dad, Manny, to take him on a trip. A specific trip.

"I want to go snowboarding," Gabriel said.

Like many kids his age, Gabriel is a sports fanatic. His bedroom is filled with images of baseball, basketball and football athletes.

Gabriel says he wants to be a basketball player just like Michael Jordan. That's a tough dream for any kid -- but it's even tougher for Gabriel, because he faces some rare and serious obstacles other kids don't.

Gabriel has multiple sclerosis -- a neurological disease once thought to strike adults only.

According to the National Multiple Sclerosis Society about 400,000 people in the U.S. suffer from the disease, but the number includes only about 400 kids. And because doctors rarely encounter kids with the disease, the diagnosis sometimes gets delayed.

The Gonzalezes said it took them more than a year to find out what was happening to their son. Gabriel showed the first signs of MS when he was about 3.

"He had problems walking," Manny Gonzalez said. "He was walking funny, and he was forming [something] like a gate with his legs."

Some therapy seemed to help, but when Gabriel turned 4, his knees stopped supporting him.

"He couldn't stand up on his own; he was very weak in his knees and he would trip on himself," Manny Gonzalez said.

Many tests later -- including an MRI, a spinal tap, and even a test for HIV, which came back negative -- Gabriel and his parents went to the Mayo Clinic in Rochester, Minn., where they learned the problem was MS.

The disease, which breaks down the nervous system, causes people to lose balance, sight and muscle coordination. There is no known cure.

One of the treatments used is a once a week shot that slows the disease's progression. For Gabriel -- who gets the treatment on Fridays -- it's a dreadful time that not only brings him to tears but often leaves him with flu-like symptoms.

'He's always asking if it's Friday. He asks: 'Is tomorrow Friday, Mommy?' " said Lourdes Gonzalez.

Gabriel doesn't know what he has that is making him sick. His parents told him the shots are meant to make him feel better.

And as he grows up, Lourdes Gonzalez said, and as questions come up, she'll tell him about the disease.

"It's hard explaining to a little boy why these things happen to him," said Manny Gonzalez.

"He doesn't know that this is a disease that can land him on a wheelchair or that he'll be using a cane when he's 20 or 30."

Although the Gonzalezes take Gabriel's illness seriously, they're determined to help him live as normal a life as he can. About a month ago, Gabriel took on T-ball and started playing in a South Miami baseball league, Manny Gonzalez said with a smile. Last year, he played soccer.

Because MS turns heat into an enemy, when summer comes around, the family focuses on indoor fun, like playing basketball at the Coral Gables Youth Center or going to the movies, Manny Gonzalez said.

"We do of course let him out and play but we're not going to do it . . . when the sun is very strong," Manny Gonzalez said. "We have to realize that certain times of the day it just makes him feel too uncomfortable."

The family's routine weekend boat excursion was also readjusted to Gabriel's needs, said Manny Gonzalez, adding that they don't go boating as often as they used to, and do it early in the morning or when the sun is coming down.

"We just want to live a normal life," said Lourdes Gonzalez. "We just hope that [the disease] doesn't get severe, that it's mild and that we get through the years until that cure comes up."
 

Copyright © 2004, The Miami Herald