Tampa Mother Continues to Fight for Son with Alexander Disease

May 6, 2014

Justin Narvaez could be the typical 15-year-old boy. He can be stubborn, shy, happy, and he loves to ride horses. Pretty typical, right?

Not at all. Justin was an infant when he was given a death sentence. He, and his mother, Sary, along with his brother, Austin, refused to accept it.

Justin has made it further in life than any child who has ever been diagnosed with Alexander Disease. No one, according to records, has ever made it to the age of 15. The average age of death is about 3 years old. Justin has had some close calls along the way – and some scary seizures – but he keeps on fighting.

Justin is, simply, a miracle. Born with the very rare disorder of the nervous system, Alexander Disease is a group of disorders, called leukodystrophies, that involve the destruction of myelin, the covering that insulates nerve fibers and promotes the rapid transmission of nerve impulses. The end results include seizures and developmental delay. Since 1949, approximately 500 cases have been reported, worldwide.

Justin will probably never walk. He can’t communicate except for words that come out rarely and always brings tears to his mother’s eyes. He’ll never go to school, and he gets frustrated sometimes, but he fights through it.

He rides horses, with assistance, at the Bakas Equestrian Center, which works with children with special needs. Justin might not be able to speak, but he communicates with his eyes, and they light up when he is at the farm.

His mom works out of the house and Austin, 13, is home schooled. Sometimes the money for treatments is there, sometimes it isn’t. She has spoken all over the world to doctors and legislators about stem cell research. The best help she could find was in China. In a battle for her child’s life, she isn’t afraid to say what is on her mind.

“According to every doctor, he was supposed to be dead by now,” Sary said. “I’ve done a lot and plan to do more. I contacted President (Barack) Obama to look for ways for better stem cell research. Life is hard enough for anyone, even the ones who don’t have this disease. Somebody needs to do something about it. I had to go to China and cry like a baby. But it’s tough to find help (in America).”

As Justin watched a movie with his brother, Sary went on.

“It’s a disgrace that there’s hardly anyone to help,” she said. “All they told us is that he would never make it four years. One doctor told me to just go home and enjoy my son while I had him.”

Read more here.

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