The mother of an Indiana boy who is battling a terminal form of muscular dystrophy isn't giving up the fight, despite a setback from federal health advisers.
Laura McLinn has testified in Washington several times for the passage of an experimental drug to treat her son's disease. Six-year-old Jordan McLinn has dreams of becoming a firefighter, despite his battle with Duchenne Muscular Dystrophy.
Senator Joe Donnelly (D-Indiana) asked Laura McLinn to speak to an FDA panel Monday and to read a letter he and three other senators wrote in favor of the drug.
"Every person in this room has been given a shot at this thing called life. We didn't deserve it, but God gave it to us anyway. There is no lawful, moral, scientific, or ethical reason to deny these well-deserved boys a chance to live their lives and fulfill their own destinies," McLinn told the panel.
The panel of experts to the Food and Drug Administration voted 7-3 Monday that the drug was not shown to be effective for the debilitating degenerative disease. Three panelists abstained from voting.
While not binding, the panel's view carries weight in FDA's final decision whether to approve a drug, which has become a rallying point for patients and families affected by the deadly disease
The vote followed a decidedly negative FDA review posted online last week. It concluded that "there does not appear to be any evidence of efficacy" for the drug.
(The Associated Press contributed to this story.)
