FAMILIES AWAIT PROGRESS ON STEM-CELL RESEARCH

Colton Rhodes calls his disease "didabetes." At age 5, the Jackson, Mo., boy doesn't remember a life without needles, but he's already worried about how it with affect his kindergarten year.

John E. Jenkins heads home from work to hand-feed lunch to his wife. Lou Gehrig's disease has frozen her limbs and made swallowing an ordeal.

These are the daily struggles of families awaiting the promise of embryonic stem cells. They were glued to President Bush's televised announcement Thursday that he would allow federal funding for limited medical research on stem cells.

And they wait for science to help.

Melody Rhodes is finished with her ethical struggle on embryonic stem-cell research.

A Catholic, she believes in the sanctity of life. A mother, she wants her diabetic son to be cured.

"I deal with this on a daily basis," she says. "And I feel that God gave us these scientists who are making advances. He wouldn't let that happen if it wasn't going to benefit society."

She describes life with Colton as being in two-hour increments. Every two hours, she or her husband, Kevin, do something that involves Colton's disease. A blood sugar test. An insulin injection. A snack time.

Since he was diagnosed at age 3, his family hasn't jumped into the car for a quick trip anywhere. Travel is an ordeal of planning, planning, planning for anything that might affect Colton. At his day-care center, every employee had to be educated about diabetes and how to handle an affected child.

Right now, Colton is a bright-eyed, energetic boy with a healthy appetite. He will begin kindergarten soon with other Jackson children his age, but he declares to his mother, "I can't start school with didabetes!"

His parents already have discussed whether to let him participate in human testing of stem-cell research.

"We've talked about that quite often," says his mother, who is 34. "He is so young right now, I'd want to wait until he could have a say in the decision. But once some testing had been done, once they had some results back, yes, we would let him participate."

Morning routine

Each morning, John E. Jenkins places his 51-year-old wife Mercedes in a wheelchair, brushes her long brown hair and puts on her makeup. "She's a very beautiful woman and she likes to look beautiful," he says.

Then he cuts her breakfast into tiny bites to feed her. "On a good day, it takes 45 minutes; on a bad day, an hour and a half."

The Hendersonville, N.C., woman has Lou Gehrig's disease, also called amyotrophic lateral sclerosis or ALS. The progressive neurologic disease gradually paralyzes patients until they cannot swallow or breathe. It started with a limp in 1991. Today, she cannot move her limbs, has trouble swallowing and struggles to speak.

Mrs. Jenkins has tried every available treatment and clinical trial. Then her husband heard that scientists put stem cells into paralyzed rats who could move again. If scientists could help rats with spinal cord injuries, he thought, why not ALS paralysis?

So last year he started mailing a photograph of his wife to stem-cell researchers around the world, asking that she be first in line once a therapy is ready to test in people.

The reality, scientists say, is that any such experiment would be years away.

Managing editor Heidi Hall contributed to this report.