On a picturesque farm, complete with low-rising hills, a quaint house and expansive skies, is a young family dealing with ugliness and suffering. For two years, Kara Clardy has been struggling with multiple sclerosis, an inflammation of the central nervous system, which includes the brain, spinal cord and optic nerves.
Two hours away, in urban South County St. Louis, ugliness again rears its head. For the past 22 years, Jeff McGarry has used a wheelchair, paralyzed from the neck down.
Besides their chronic conditions, the Clardy family and McGarry have something in common: They are passionate about stem cell research and its future in Missouri.
Two stories of anguish
The Clardys are a young couple — Rob is 37 and Kara 36 — who moved to Moberly, Rob Clardy’s hometown, after several years of living on the East Coast. Rob Clardy is a furniture designer and maker, and the couple returned to Missouri because of its better wood and the lower cost of living. They also thought the state would be a good fit for their three children.
Once in Missouri, Rob Clardy started making furniture out of a shop on his father’s farm, and the couple were in a seemingly good place in their lives. That changed when Kara Clardy went in for a postoperative examination of an existing condition, Arnold Chiari malformation, in which the cerebellum protrudes into the spinal canal. Her doctor recommended that Kara Clardy have magnetic resonance imaging performed on a repair done in 1999, since she had just had a baby. At MU, they found that she also had MS.
“I remember that day because we went out to lunch at the mall, and we were sitting there both kind of in a daze,” Rob Clardy said. “So we decided to just buy some books, and we just read about it all night.”
Kara Clardy, a registered nurse, was especially scared because she knew a little about the disease.
The initial shock had finally set in, and the Clardys began to think about the future.
“The Chiari thing was a pretty big deal, and our middle son was born with pediatric epilepsy,” Rob Clardy said. “So we’d had some pretty big hits in our young life.”
McGarry, 39, has a story that begins more than 20 years ago. In September 1984, McGarry was on vacation with some friends at a lake in Fulton. It was the day before McGarry would turn 18.
“I went fishing first, but it was such a scorching hot day that we decided to go swimming,” McGarry said. “I went diving, but the water was shallower than I thought.”
Diving into the lake, McGarry hit the bottom, striking his forehead. He didn’t know it yet, but he had broken vertebrae between his third and fourth cervical nerves. Floating to the top, McGarry said that he could see his arms, but that he couldn’t feel or move them.
“I could hear my friends on the shore talking and laughing, but they had no idea what happened,” McGarry said. “I just started saying the Lord’s Prayer, and didn’t get halfway through before water started filling my mouth and I started to drown.”
McGarry’s friends eventually noticed, and one of his best friends pulled him out and started performing CPR.
Kara Clardy wasn’t ready for the challenges MS would bring. As a nurse, she was used to a busy work style, and a sense of shame set in.
“We didn’t want anyone to know about it,” she said. “I didn’t want anyone treating me any differently, because I’ve always been on top of things.”
She became open with her illness only about a year ago, she said. She blames the illness for being passed up for jobs, but she admits the demands of nursing and MS just don’t mix.
“Unfortunately, I just can’t physically do the job anymore,” she said.
One of the most devastating effects of MS is exhaustion, and both the Clardys say that has caused the greatest change in their day-to-day lives. Because of it, the family has a daily routine from which they don’t really stray.
“You’ve gotta really keep things limited and stick to planned routines,” Rob Clardy said. “We do A, then B, then C, and as long as that rhythm doesn’t get too upset, then we’re OK.”
A typical Clardy day starts at 5:30 a.m. They get their kids dressed and out to school. After that, Kara Clardy says, she tries to get as much housework done as possible. By 10 a.m., though, she needs a nap. At about 6 or 7 p.m., Kara Clardy is done for the day.
“It’s very hard, and my kids are understanding, but I’ve been a kid and it does kind of stink when you can’t get anyone to do anything with you,” Kara Clardy said.
Despite the obstacles MS has created, the Clardys are sticking steadfastly to their goals and dreams, one of which is to build a house. They’ve had to alter their plans for a two-story home, since Kara Clardy will one day be confined to a wheelchair.
“Necessity says you can’t be as active, but you can’t give up that easy on big life goals or else the MS wins,” Kara Clardy said.
McGarry has been in a wheelchair since he was 18, and, unlike the Clardys, he didn’t have the time to plan for it.
He was only a week into his college career when his accident forced him into six months of rehabilitation. He was able to go back to school in the fall of 1985, but he required someone to take notes for him.
McGarry persevered, though, and eventually earned a master’s degree from St. Louis University. Despite the accomplishment, McGarry does concede that certain parts of his life have suffered because of the injury.
“It created some distance with many friends, but I’m still good friends with some of those guys,” McGarry said. “It’s still an adjustment, though, and it requires ongoing perseverance.”
McGarry tries to lead a normal life. He has a full-time job as a counselor with a vocational rehabilitation state agency, and he’s currently taking lessons from a neighbor on flying electric airplanes. He is also an avid hunter and said that his parents, with whom he lives, have been instrumental in his being able to do so much.
“My parents are saints and very special people,” he said. “They’ve allowed me to gain as much independence as I want.”
This past year, the Clardys started volunteering for the fight to get a constitutional amendment on November’s ballot that would protect embryonic stem cell research. Working with the Missouri Coalition for Lifesaving Cures, they have become ardent supporters of the research. Their support of the amendment, though, has forced them to examine some of their beliefs.
Kara and Rob Clardy, both self-described conservative Republicans, have weighed the arguments of their religion and their ideological positions, and they are confident that support for the issue is not inconsistent with their beliefs.
“The priest here in town has never said anything about this, but if he did, I’d go up and tell him that if the God I worship and love told me I was going to hell for supporting this, then I guess I’m going to hell,” said Kara Clardy, who was raised Catholic. “If it’s going to cure me, and I’m going to be able to spend time with my kids ... then I’d rather be able to do that, and have my kids have a better memory of life than (of) mom being sick all the time.”
McGarry has also gotten involved in the fight, albeit on the other side. An independent voter, he has worked as a volunteer with Missourians Against Human Cloning. He says he is a deeply religious Catholic, and through spiritual growth, he has grasped the fact that life begins at conception.
“This became a driving force that I would speak about to other people,” he said. “There should be no exception to destroying a life in order to enhance mine or someone else’s.”
McGarry empathizes with those who are suffering, but for him there is no question that the process is unethical and immoral.
“In no way would I let them perform the surgery, even if there was a breakthrough, because of my beliefs,” he said. “It’s been 22 years, and I’d love a cure, but not at the expense of destroying a human being.”
The topic is a sensitive one, and each side has tried its best to appeal to the better conscience of voters.
Rob Clardy spends much of his time talking to people and educating them, trying to clear up what he says is misinformation.
“I just want to make sure that everyone gets a straight scoop, so that people make their own decision about it,” he said. “I’m going to tell you why I like it, but you’ve got to make up your own mind.”
Not trying to persuade people is important to Rob Clardy. He concedes that the coalition would probably like him to persuade more often, but he’s not comfortable doing that.
“It’s a big deal, and you’ve got to square that with yourself, and me trying to influence you is wrong,” he said.
Rob Clardy also talks at length about the possibilities for real breakthroughs, and says that most people are concerned with “how it affects me.” Supporters have said that stem cell research could help as many as 70 different diseases, including cancer, Parkinson’s disease and amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Rob Clardy thinks most people can be reached by just asking them if they know someone with one of the top six diseases.
The Clardys also talk to people about something they say everyone can understand: their pocketbooks.
According to the ballot language, the estimated cost of the amendment will be between zero dollars and $68,000, a figure Rob Clardy said the state can more than afford. He said it could easily be recovered with the kind of people who want to do research at The Stowers Institute in Kansas City and Washington University Medical School in St. Louis.
“That’s not just medical money, either; that’s people with good jobs coming in who need housing, food, clothing and all that other stuff,” Rob Clardy said. “It’s a good hit for Missouri’s economy in general.”
McGarry’s approach has been based around ethics and morality. Citing religious demands to protect life, he urges people to research the issue, especially those who are suffering and who call themselves conservative opponents of abortion rights.
“This is not only destroying human life, it’s also cloning,” McGarry said. “People need to make a decision based upon truth and their own conscience.”
Is a Breakthrough Possible?
Both Rob and Kara Clardy are hopeful that stem cell research and passage of a constitutional amendment in November will yield results both for people suffering and for the state as a whole. But how feasible is this research, and how long can people expect to wait before any real breakthrough occurs?
William Neaves of the Stowers Institute for Medical Research cautions that science is slow and requires patience on all sides.
According to Neaves, the first adult bone marrow transplant took place in 1956, and it was 24 years later that an infant doomed by disease had a successful bone marrow transplant.
“The research started in the 1930s,” Neaves said. “What would have happened if bone marrow transplants had been banned?”
Embryonic stem cell research has not produced any major results for humans, but scientists are excited about an experiment that John McDonald conducted on rats.
While at Washington University, McDonald studied 62 rats whose spinal cords had been severed, thereby making them incapable of using their legs. Twenty-eight of the rats were treated with somatic cell nuclear transfer, the process used in embryonic stem cell research.
Those treated were able to walk within two weeks. The remaining rats never regained the use of their legs.
These are the kind of results Neaves thinks embryonic stem cell research and passage of the amendment may yield for humans.
“If we have this, we could find cures for Parkinson’s and diabetes, and we have a better chance of finding those cures that might emerge in fifteen to twenty years,” Neaves said. “We should declare once and for all that if a field of research is allowed by federal law, it shouldn’t be prevent by the Missouri legislature.”
Opposition to stem cell research most often has to do with the creation of embryos in order to destroy them. There are possible alternatives, however. According to their Web site, MAHC says that research using adult stem cells, which McGarry wholeheartedly supports, has been very successful in treating more than 65 illnesses. These stem cells are usually taken from umbilical cord blood, the placenta and bone marrow. Another alternative involves using embryos from fertility clinics. These embryos, which are usually destroyed anyway, could be used for SCNT, thereby averting the need to create new embryos. MAHC also believes that protecting embryonic stem cell research will take away resources from a process that actually has produced real results.
“We are not anti-cures or anti-helping people,” said Jaci Winship, MAHC executive director. “We just don’t think embryonic stem cell research is ethical.”
Hope for the Future
For now, Rob and Kara Clardy patiently wait and staunchly defend stem cell research.
“This is about helping sick people,” Rob Clardy said. “This is important and worth your time to think about.”
McGarry, meanwhile, continues to fight to ensure that the state does not engage in unethical practices.
“There is no compromise on this issue,” he said. “(Embryonic stem cell research) should not in any way take place, because these embryos are destroying human life.”
Despite their conditions, however, both McGarry and Kara Clardy have a hopeful outlook on life, and each hopes their supporters are tenacious enough to keep working at achieving their goals.
“I just urge people to do the research so they can make an educated vote,” McGarry said.