We Have No More Time Says Mother Of Boy With MD

Posted: Published on March 20th, 2014

This post was added by Dr Simmons

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DENVER (CBS4) With passion and tears Jennifer Dunne pleads for answers and action from the Food and Drug Administration, which has held up the use of an experimental drug that has shown promise for children like her son, a 9-year-old with Duchenne Muscular Dystrophy, a 100 percent fatal disease.

They need to move we have no more time, no more time, Dunne told CBS4.

Her son, Ryan, a third-grader, was diagnosed with DMD years ago. It is a genetic, muscle-wasting disease that hits young boys and is always fatal, usually by the time the patient reaches their mid-20s.

But two experimental medications have shown great promise in treating the disease. In 2013, Ryan was placed on one of the medications as part of a six-month trial study.

When there was no hope, all of a sudden things were getting better, said Ryans father, Chris.

He walked further, had better stamina and energy and didnt fall into bed saying, Im tired, said his mother. And when he was pulled off of it he went downhill immediately. The drug is effective.

A second medication that has also shown promise in trials and that would likely work for Ryan is called eteplirsen. It has also shown extremely strong results in studies. For more than two years the drug was given to 12 boys with DMD. All reported improvement and none reported any side effects.

Patients and their families have requested the Food and Drug Administration give eteplirsen whats known as accelerated approval so patients like Ryan could have access to it right away, even as studies continue.

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We Have No More Time Says Mother Of Boy With MD

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