Hope, fear greet Bush’s stem cell decision


Five-year-old Jamie Langbein’s mother gets ready to race her daughter’s insulin pump across town after the diabetic child forgets to take it to art camp. Ann Campbell literally inches her way out of bed, unable to sit until she gets her first dose of Parkinson’s medication to temporarily loosen her stiff muscles. And 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. But after President George W. Bush allows limited federal research with these much-touted cells, the families’ hope mixes with fear that the wait may prove too long. “Disheartening” is how Lyn Crozier Langbein describes Bush’s decision, worried that a year from now scientists will discover they need more stem cells to work with than what’s allowed. That would be a crucial year lost for Jamie. Since she was 2 and diagnosed with lifethreatening Type 1 diabetes, the girl from the East Coast state of Maryland has had her fingertips pricked 10 times a day to check her blood sugar. A pump on her waist infuses insulin when needed — except when she’s exercising, or changing clothes, or it’s super hot outside and the insulin can’t take the climate. “We’re constantly taking it on and off,” Langbein sighs. Despite all the blood tests and the pump, considered today’s best therapy, Jamie feels faint or thirsty several times a day. “I don’t know if she’s whining because she’s being a 5-year-old or it’s diabetes. It’s so frustrating as a parent.” Then comes the daily phone call: Jamie’s at art camp and has dutifully tested her blood sugar. Langbein does a quick calculation and decides it’s low enough that Jamie can eat two cookies if she gives herself an insulin boost. Minutes later the phone rings again. Jamie just discovered she forgot to wear her pump. No cookies, her now frazzled mother instructs — “I’ll get the pump there in half an hour.” “We’ve tried very hard to make sure she knows she’s a child first and a child with diabetes second,” Langbein says. But, “we have this lifetime of living with diabetes. It’s not fun at all.” Which is why the Langbeins were excited to learn about stem cells, master cells found in 5-day-old embryos that give rise to all human tissue. (There are different stem cells found in adult tissue that also show promise in curing devastating diseases.) Preliminary research shows it may be possible to turn embryonic stem cells into insulin-producing pancreatic cells, perhaps within Jamie’s lifetime. 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 woman from North Carolina 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. In California, Ann Campbell and Greg Wasson try to keep a sense of humor about the Parkinson’s disease afflicting the couple. Within an hour of her morning dose, Campbell’s medication unstiffens her muscles, but a side effect is sudden jerking limbs. Wasson’s drugs sometimes suddenly wears off, leaving him almost motionless. “I don’t get too close to her when she’s cooking, and I serve as a coat rack when I’m off,” Wasson jokes. The pair were diagnosed with Parkinson’s six years ago, at unusually early ages — 36 for her, 43 for him. They met through an Internet patient chat. They’ve watched each other’s disease slowly worsen. And then they heard scientists had made neurons from embryonic stem cells, including a mouse experiment where the cells made a chemical crucial to curing Parkinson’s. It’s a long way from a mouse to a man. But Wasson says Bush’s decision “has opened the door” to research that within 10 years could let him play softball again.