Jennifer: Emily Gallagher seemed healthy when she was born.
Nina Kenny: About 3 months old was when we notice that she wasn’t doing well she was supposed to do as far quiet most of development holding her head up sitting up by yourself.
Jennifer: At 9 months researches diagnosed Emily was severe spinal muscular atrophy. A disease that almost always causes respiratory filar and deaf by age 2. Emily is now 5 she is been on a ventilator’s since she was 10 months she cant swallow so she is fed through a tube but she can and loves to talk.
Emily: She has 2 covers.
Jennifer: Pathology of SMA is similar to an adult disease called ALS Lou Gehrig’s disease. The drug riluzole slows the progression of ALS and a small study shows it may do the same for babies with SMA.
Barry: This is the first time we even remotely can say may be we have stumbled across something that might slow the process of deterioration.
Jennifer: Of the 10 babies in the trail, 3 received a placebo. All died in the first year, 7 was given riluzole, 4 of those of babies died too. But 3 survived and are still taking the drug.
Barry: We have 3 children still leaving one at age 5, one at age 4 and one at age 3.
Jennifer: Emily was not in the study but she will start taking riluzole with a hope of extending her life even more.
Nina: Every day is a miracle. So if it’s going to give us another day that’s wonderful.
Jennifer: This is Jennifer Mathews reporting.
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