If the drugs work, researchers dream that a type 1 case could be turned into a type 2 or a type 3. They can't be given the deleted genes, but damage could be limited.

Swoboda's is the pilot site for Project Cure SMA, funded by Families SMA. The national coalition of SMA families provides up to $200,000 a year for the research. Others, like Miracle Flights for Kids, help. That group flies the children to the study free, using air miles other people have donated. Local foundations are helping as well.

Right now, 60 SMA children are enrolled in the project and must be assessed every two or three months. The drugs are taken orally on a daily basis (Colin, for instance, takes his four times a day).

And the parents aren't just waiting for a clinical trial to solve their child's problems, either. When Taleah was 7 months old, she lost her ability to swallow. The English family flew from their home in Orem to New Jersey to explore new treatments there and brought back with them some of the methods used to help children breathe and clear their lungs. Swoboda has gratefully adopted whatever works for her other patients. For instance, Taleah uses a machine called a BiPap to help her lungs expand when she sleeps and another to help her cough.

The little girl is very bright and her parents try hard to find the balance between keeping her safe from germs and denying her a full life. She goes to the zoo once a year. The extended family recently took a wagon ride to see Christmas lights at an area display. But it is quite a production to leave the house, so the trips aren't as common as the little girl would like, Monica English says. Once a year, the family goes to the SMA convention, where she socializes with other children who share her limitations. When the time comes, she will go to public school.

She now provides some of her own care, holding out her hand for the suction device that clears excess saliva. She knows what medicine she's supposed to take and when she needs specific treatments. "The things we do are things she asks for."

With careful, tender care, Taleah may live a long time. Or she can die tomorrow, a truth her mother knows well. She's done mouth-to-mouth on her daughter and learned to live "moment to moment."

They find joy when Colin kicks his tiny legs, in part because it was a joy Taleah never had, Monica English says. But they also embrace "things I would never have experienced without experiencing Taleah. She is the most patient child. And she has helped me appreciate life itself in a way I never did before."

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E-mail: lois@desnews.com