Boy Gives Brother the Walk of Life
Jeffrey and Christopher Rosen, brothers 7 and 2, are too young to really understand the tie that binds their lives.
“I like him,” Jeffrey says of Chris. It is a statement pronounced with a bit of exasperation. The obvious tends to bore this child.
Christopher, just awakened from his nap, almost rubs his Popsicle against his brother’s cheek as he puts his arm around the bigger guy’s neck. He smiles, between licks.
Anne Rosen, the boys’ mother, talks about her sons:
“Luckily for us, we didn’t know about Jeffrey when we decided to have Christopher,” she says. “Otherwise, Christopher wouldn’t be here today. . . . Christopher seems like a miracle. He is healthy. There is no doubt that he does not have the disease.”
A little over a year ago, Jeffrey’s doctors diagnosed Duchenne muscular dystrophy, a genetic disorder for which there is no cure.
Most people with the disease--their bodies do not produce a protein essential for muscle strength--die near the end of their teens. Almost all are boys. First they lose the ability to walk, then to swallow and to breathe. Their heart muscles cannot pump anymore.
The Rosens have come to accept this, as best they can. Anne’s eyes rim with tears when she speaks of such things; her voice becomes soft.
Then that silently fades away. Or maybe Anne Rosen simply pushes it back.
Strength, determination and the will to fight seem to hold Anne now. She so desperately wants to control this terrible thing that has changed her family’s life.
“It’s been a nightmare in a lot of ways, and we are now just getting out of it,” she says. “It’s been agony and action, I guess you could say.”
Within days of Jeffrey’s diagnosis, the Rosens amassed research on the disease and found out who was fighting it and where. They were living in Louisville, Ky., where her husband, Rick, was an executive with Pepsico. Experimental research being done in San Francisco looked to be their best shot. And it was.
Jeffrey was accepted as the 10th and final subject of a study that aims to determine whether the missing protein--dystrophin--can be produced after muscle tissue is transplanted into a sick child from a donor with at least a 50% match.
The compatibility of Christopher’s tissue is 100%. But a similar research project in Ohio, where the Rosens are from, was reluctant to use the boys because of Christopher’s very young age. Two review boards debated that ethical issue in San Francisco before the Rosens were approved there.
To be closer to the research site, Rick Rosen’s company offered him a lateral move to Taco Bell in Irvine. The family moved to Mission Viejo last August.
Yet this story does not so neatly wrap up. Dr. Khema Sharma, a neurologist assisting in the project at Pacific Medical Center (formerly Children’s Hospital) in San Francisco, stresses that theirs is only the most basic, experimental research toward a cure.
“The only good news is that there is no bad news so far,” Sharma says.
The preliminary results of this first round of research should be available in April, he says. The Muscular Dystrophy Assn. has given the researchers a grant for another three years of work. Round 2 may be conducted with patients no older than 4.
“We are looking for a cure,” Sharma says. “But this is only a step toward a cure. That is a long way away.”
All of which Anne Rosen, 35, is aware. It is unlikely that, even with the best possible outcome, the research in which Jeffrey is involved will save his life. She hopes that perhaps it will lengthen--by weeks, or months, or even longer than that--his ability to walk.
And that is what she has told her younger son too, that by giving his tissue he is helping his brother as only he can do.
Muscle tissue was removed from Christopher’s leg in September of last year, under a local anesthetic. His mother says it took five people, including herself, to hold him down.
“He was crying, ‘Mommy, help me! Help me!’ ” Anne says. “It was very difficult. From then until they implanted the tissue in Jeffrey, about a month later, that was when I had the worst of my doubts. I don’t have the money to do this. ‘What am I doing?’ I would ask myself. I just got really discouraged. I told the doctors I didn’t think I could continue.”
Yet she, and her sons, did continue--even though it meant physical and emotional pain for both boys.
“I thought maybe I can give him two more months of walking,” Anne says. “When you have a choice between two months and nothing, that sounds pretty good.”
It is too early to know whether the Rosens will continue in the research. It is not their decision to make. They feel lucky. Thousands of other ill children are never given even a ray of hope, which, for now at least, is what the Rosens have: a small fissure in a medical prognosis that is unfailingly bleak.
“It bothers me to do something painful to one of my children to help the other,” Anne Rosen says. “It’s painful. . . . But if it can forestall a wheelchair by a year or whatever, it is worth it. For Christopher, it’s 45 minutes out of a long--we hope--lifetime, where for Jeffrey, we know we only have 10, 12 more years. That does not make it easy.
“It’s hard to express how difficult it is, where I am making a decision for one child where he is not capable of making his own decision. . . . But Christopher’s muscle is going to grow back. And Christopher worships his brother. If he had adult powers of reasoning, I think he would do the same thing. It’s hard to be in the beginning stages of research.”
Where genuine hope is as rare as a cure. Where decisions have jagged edges. Where time is more precious than gold. Where you do what you can to help your child.
And if not Jeffrey Rosen, this time, then another Jeffrey Rosen, or Smith, or Kim, or Garcia, later on.
