Posted on Mon, May. 01, 2006

Family rallies with support and hope to aid stem cell research, quadriplegics



Sharon Langenhorst, left, her son Matt Langenhorst, and his wife Erika Langenhorst.

Sharon Langenhorst's life changed when her son broke his neck and became a quadriplegic five years ago.

She worries. She hopes. She lives with the heartache of watching her 36-year-old son, Matt Langenhorst, have to be completely dependent on someone and she is frustrated.

"It is such an overwhelming thing to have happen to you, but we haven't lost hope," Langenhorst, 57, of O'Fallon said. "It's not always going to be like this. We have to keep telling ourselves things will get better, for all the people suffering from paralysis. I believe there is a cure out there, and I believe we are on the verge of finding it."

Matt Langenhorst, formerly a police officer with the St. Charles, Mo., Police Department, was in a car accident on Feb. 8, 2001. The accident left him completely paralyzed.

Sharon Langenhorst left Friday for Washington, D.C., to be part of the Working 2 Walk Symposium and Rally that ends Tuesday. The event focuses on the effort to find a cure for paralysis and encourage lawmakers to pass the Christopher Reeve Paralysis Act, H.R. 1554, S. 828.

The act, if passed, would advance collaborative research into a cure for paralysis as well as improve the quality of life for people living with paralysis. The act requests federal spending of $100 million over three years to fund for paralysis research, rehabilitation and care studies, improving the quality of life for paralyzed people and basic rehabilitation and health sciences research.

"You can't tell someone that can't move for five years to wait another five to 10 years before they'll do something. That's a long time," Sharon Langenhorst said. "Hopefully, this thing will get passed this year. It needs to be passed."

While in Washington, Langenhorst will lobby local politicians to pass the act and hear Susan Sarandon, a close friend of the late Dana Reeve, talk about the act. A neuroscientist and several inspirational speakers will talk about their lives and paralysis during the rally.

Last year, Matt and his wife, Erika Langenhorst, 32, of Fairview Heights, also attended the rally. They are staying home this year and preparing for a trip to Beijing in September so Matt can undergo a stem cell surgery that may help him recover some use of his paralyzed limbs.

"Right now, the act is just kind of sitting in the Senate," Erika Langenhorst said. "We just want a little more emphasis on spinal cord injuries because it's one of those things that can happen to anyone at any time. It really is a life changing event."

The surgery, which isn't covered by insurance, is not available in the United States. It will cost about $50,000 for the surgery and travel expenses, Erika Langenhorst said. The experimental surgery, performed by Dr. Hongyun Huang, a neurosurgeon in Beijing, has been done on more than 400 patients with spinal cord injuries. The transplant surgery has had limited success and raised some questions about the safety of the procedure, according to a 2006 Neurorehabilitation and Neural Repair research report by doctors Bruce H. Dobkin, Armin Curt, and James Guest.

"It's exciting and nerve-wracking at the same time," Erika Langenhorst said of the surgery and trip. "We know it's not a cure. We don't think Matt is going to get up and walk the next day but so many people have gone and had some function come back. Right now, Matt can't move anything below his neck, so even getting just one arm back would be life changing, literally."

It has been an expensive five years adjusting to Matt's paralysis. A handicapped-accessible van and special equipment to exercise his muscles have cost about $80,000. On average, the monetary cost of aiding a quadriplegic, including personal care attendants, medical supplies, medications, medical equipment, home modifications and transportation can cost more than $682,000 in the first year, with some of it covered by medical insurance. It costs about $122,000 each subsequent year, according to the Spinal Cord Injury Information Center.

"It's heartbreaking to see your child who was once a police officer and enjoyed life so much to have to live this way. It's an every day heartache," Sharon said. "If I could change places with him today, I'd do it. I'm so proud of him, that he's been able to deal with this. He is just so amazing and he continues to amaze me every day."

Erika Langenhorst hopes that one day political and religious battles over embryonic stem cell research will end so people like her husband can have possibly life-altering surgeries in their own country instead of traveling to the other side of the world.

"Other countries like England, France, China and Turkey have really been on top of stem cell research, while the U.S. is lagging behind," she said. "Until it really affects you, people just don't see what great promise stem cell research has for so many people. There is great promise there."