Oildale family fights Duchenne Muscular Dystrophy

Posted: Published on March 21st, 2014

This post was added by Dr Simmons

OILDALE, CA - It is a disease that has no known cure. Although advances are being made in the treatment of Muscular Dystrophy, an Oildale family says it can't come soon enough.

The Montero family learned just two months ago, their 5-year-old son has Duchenne Muscular Dystrophy. They've been researching treatment options and came across a drug called Eteplirsen. But, it is currently in the trial phase with the FDA. Five-year-old Anthony Montero is all smiles as he plays with his sister and family. You wouldn't know he has Muscular Dystrophy, a disease that attacks the muscle fibers.

"When he had Muscular Dystrophy it was the hardest. That is when we started looking up the types of Muscular Dystrophy and Duchenne is the one that came up," said Maria Montero, Anthony's mother.

Doctors say most children with Duchenne will need a wheelchair before they reach their teens and often die from the disease in their twenties.

"My son talks about it every day. He wants to be a firefighter or a police officer, and only I know the truth if he can't get this medicine," added Maria.

Determined to do whatever they can, the Monteros came across information regarding a drug called Eteplirsen. In clinical trials, Duchenne patients were asked to complete a six-minute walking test. Those patients taking the drug walked almost 70 meters more than those patients taking a placebo. But, Eteplirsen is still in trials with the FDA, so the Monteros are asking everyone to sign a petition on the White House website, urging the FDA to fast-track approval of the drug.

"Takes about ten minutes tops from the time you create your account to the time you actually sign the petition," said Jose Montero, Anthony's father. "It's a little time consuming, but ten minutes of your life to save a life is not that bad."

To view the White House petition, go to http://www.theracetoyes.org.

Original post:
Oildale family fights Duchenne Muscular Dystrophy

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