By Rebecca Friedman
Washington, D.C.- -In her home in Guilford, Connecticut, Audrey Sundewall is up throughout the night checking on her son. Usually at 2 am, 4 am and 6 am, Lucas calls for her if he is thirsty or does not feel well. For a mother with a young child, this is a typical night. Lucas, however, is 12. He is quadriplegic, paralyzed from the nipples down.
“They told us he was living in the best of times,” says Sundewall, commenting on what the doctors told her after her son became paralyzed at seven years old, by a tumor pressing on his spine. “We truly don’t believe that he’s going to spend his life in a wheelchair.”
Sundewall has high hopes for Lucas’s future, but those hopes may not come to fruition since the ban on funding for embryonic stem cell research last August.
Over a million people are paralyzed in the U.S., according to reports issued by the Christopher & Dana Reeve Foundation. Christopher Reeve, of Superman fame, pushed hard for stem cell research after he became paralyzed in 1995 during an equestrian competition. In 2009 President Obama signed an executive order that overturned a policy that limited federal funding for stem cell research. Paralyzed teens and young adults like Lucas are those that can benefit from embryonic stem cell research. There is no cure for a spinal cord injury and embryonic stem cells may be the key to finding a cure as they could help replace damaged nerve cells. Though devastating, a spinal cord injury does not have to change the person, only their mobility. In fact, there are those who say people should be fighting for more rights for people with disabilities rather than keeping the focus on finding a cure.
On August 23 of this year, U.S. District Judge Royce C. Lambeth issued a preliminary injunction that would stop funding for embryonic stem cell research. Though the ban was temporarily lifted on September 9, it does not guarantee that funding will still be given.
“It’s a very devastating devastating, devastating ruling,” said Andrew Morris, Director of Legislation at United Spinal Association, located in Washington, D.C. “When a judge can just wipe out the future of all research, it’s astonishing!” said Morris, emphatically waving his arms.
Morris is concerned about where the ruling will leave American scientists. He is worried that there will be a “brain drain” on America. Other countries are progressing in embryonic stem cell research and Morris believes that “we’re going to lose our scientists to other countries.”
Those who work one on one with teens and young adults with spinal cord injuries know how important the research is. Nurses and physicians at Craig Hospital, in Denver, Colorado are those who know. Craig Hospital is exclusively dedicated to spinal cord and traumatic brain injury rehabilitation and research.
“Embryonic stem cell research is the most promising area that we have to finding a cure for spinal cord injury,” said Deidre Bicker, a registered nurse at Craig hospital.
On October 3rd of this year embryonic stem cell research had a breakthrough. Gary Smith of the University of Michigan has created an embryonic stem cell line that replicates. This could potentially mean an endless supply of embryonic stem cell tissue that could be used for research purposes. There is no cure for spinal cord injury because those types of injuries destroy nerve cells. The human body cannot regenerate these types of cells.
“Once nerve cells become destroyed, they cannot regenerate anymore,” explains Bicker. Unless there is a cure for spinal cord injury, no one who has an injury can ever fully heal.
Charles Krauthammer, a syndicated columnist for the Washington Post writes on stem cell research and his personal ethical issues on the matter. Krauthammer was paralyzed when he was 22 in a diving accident. In an interview with Frontline, a television program and website sponsored by PBS, Krauthammer explains how difficult working with the spinal cord is.
“The neurology of the spinal cord is so complicated and misunderstood -- [it's] not understood why there's no regeneration in the central nervous system -- that there was really no real hope of any cure. And in fact, the reason I'm particularly sensitive about this is when I was hospitalized and in recovery, I was in rooms with other kids who were also injured, who were not medical students and who didn't know any of this and were living for the cure and had sort of mortgaged their lives and their futures to the cure that was never going to come.”
Once rehabilitation starts, there will be small improvements, but depending upon the injury and where it is on the spinal cord, the person may not be able to function as they did before. “Spinal cord injury is pretty devastating,” says Bicker.
A spinal cord injury changes a person’s life forever, but Bicker does not believe that a person’s mental state has to change due to the injury. Bicker sees people come in and out of the hospital and has learned that a person’s change is physical, not mental. “Whoever you are before the injury, you are after.”
Sundewall has made sure of this with Lucas who has been paralyzed since he was seven and will be turning thirteen this year. Lucas plays videogames like every other able- bodied kid; though his games are limited to the Xbox, as they are the only kind he can physically play with. “He’s a straight A student,” says Sundewall and there is no masking the pride that can be heard in her voice.
Yet, while most seventh graders do their homework by themselves, Sundewall and her husband Ray, have to write out Lucas’s homework. Since he goes through a regular school day, plus exercises daily, Lucas tends to be exhausted by the time homework rolls around. “He has normal homework, but at that time he gets so tired we have to write it. He says exactly what to do,” says Sundewall.
There are at least three people at American University who understand that a disability does not make the person, it is just one part of them. Three young women make up American University’s Disability Alliance Club Executive Board. The club is an advocacy group for disabled students on campus.
“My disability doesn’t define me, it’s a part of me, “ says Allie Cannington, 18, who gets around by wheelchair. Cannington has the ability to walk, but her disease called Osteogenesis Imperfecta, makes her bones brittle and easy to fracture. If she were to walk around and trip, she could easily end up severely hurt.
The young women are all sitting at a circular table at the Mudbox. Coffee cups and textbooks surround them. Jenny Leland is the president of the club and speaks up next to describe her disability.
“It’s just one fact about me,” says Leland, 20, who has Stargardt’s Disease,
which slowly makes a person blind.
“I take a lot of pride in having my disability,” Cannington says. This issues forth a debate on disability pride between Leland and Cannington. Arms are waving, hands are being gestured, and in general it is a fun debate. The third member of their party, Amber Laughton, 21, just watches and shakes her head at the two other girls. The debate seems to amuse her. There is a huge grin on her face.
“I have never been diagnosed with a disability, but I have one. We all do,” says Laughton.
The history of embryonic stem cell research is still relatively young. In 1998 Dr. James Thomson was the first person to successfully isolate human embryonic stem cells. In that same year, Dr. John Gearhart successfully isolated and cultured human stem cells. The cells that Gearhart worked with were able to replicate themselves without differentiating, meaning that instead of the cell changing drastically in shape and size, it stayed the same. This had a profound effect on the scientific world and in particular transplant therapy. With what Gearhart found, it could be possible to grow human tissue in laboratories to replace failing organs. Both Gearhart’s and Thomson’s discoveries could help with the future of transplants.
Today the future is not solely focused on the research. There is a debate going on if
perhaps those with disabilities should be looking toward legislation, which would give them more civil rights. There are those who believe there should be programs that will enable those who are paralyzed to lead an independent life.
“Within the spinal cord community there’s been a lot of debate on just finding a cure for paralysis,” said Morris, adding that within United Spinal Association, “promoting independence” is their main goal.
“A cure is not our main firefight. But we’re still promoting research.” The magazine rack that sits outside of Morris’s office portrays this. The magazines that fill it show pictures of paralyzed people doing daily tasks, living their daily lives with smiles on their faces.
He plays with a hot mustard packet, tossing it back and forth in his hands. “We need to focus on the here and now. People need their civil rights.”
Some people think that embryonic stem cell research is the cure and that is what they are fighting for, instead of advocacy or rights for the disabled. Cannington feels that this is the wrong idea.
“I feel that it’s false hope. The last thing I would say to my child who wants to play soccer with everyone else, is that one day he would be able to.”
Audrey Sundewall is not in this mindset and believes that research will bring about a cure for her son. To her, there is always a hope of a cure.
It is around 9 p.m. and it is time for Sundewall to start getting Lucas ready for bed. She puts in a gastronomy tube after Lucas falls asleep. The tube feeds Lucas while he sleeps because he does not get enough nutrients during the day. She will be back in his room in a few hours to check on him. Sundewall is firm in her belief that this will not last forever.
“My personal goal is to see him walk across the stage to get his high school diploma. He’s not going to live his life in a chair.”
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