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Texas man fights to get off the road to paralysis

For decades, Denton man with Duchenne muscular dystrophy has defied the odds

Posted on July 6, 2014 at 12:00 a.m.

DENTON, Texas (AP) — The 400-pound motorized wheelchair is zooming along the house-lined streets near the University of North Texas. Both riders are keeping an eye out for potholes.

Sitting is 47-year-old Michael Rasch, who has not walked on his own in almost 30 years. Standing behind him is his 78-year-old mother, Betty Rasch, who is “driving” the two-wheeled vehicle from her somewhat precarious perch on the back.

With a clear view over Michael’s head, she spots the garage-sale sign on Linden Drive and steers the chair up the driveway. “Looks promising,” Betty says, hopping down and straightening Michael’s visor in a single motion.

Their garage-sale outing is no small feat, starting with the fact Michael can tolerate a one-mile ride in a speeding wheelchair. As one of the longest survivors of Duchenne muscular dystrophy, he has lost nearly all of his muscle control, including his ability to breathe on his own.

“This is one of my favorite things to do,” Michael says, puffing on a portable ventilator throughout the two-hour trip to three garage sales. In good weather, these outings occur weekly.

“I like listening to music,” he told The Dallas Morning News (http://bit.ly/1lqk45R). “I’ve collected close to 1,600 CDs from garage sales. I’m willing to pay 50 cents to $1 apiece, if they sound interesting.”

Michael shares his passions freely but is less likely to talk about how he has outlived nearly every prediction about his life. Foremost was the grim warning that he should have died decades ago. He shrugs it off.

“Other people see something special about my life, but I don’t see it,” he says of his unexpected survival. “Everybody has issues they deal with. A lot of people are in much worse situations than I am.”

Michael was 5 when he was diagnosed with Duchenne muscular dystrophy, a genetic disorder that causes progressive muscle degeneration and weakness. Doctors predicted he would not walk past age 12, would never finish high school and probably would die a teenager.

Michael didn’t cooperate. He did not abandon walking until he was 19. He not only survived high school, he earned a bachelor’s degree in special education from the University of Missouri and a master’s in mathematics from Texas Woman’s University. For two semesters, he taught calculus at UNT.

These days, Michael requires round-the-clock monitoring and nine hours of respiratory therapy daily. Between his treatments, he tutors high school and college students in math in the home he has shared with his mother since the early 1990s.

Friends marvel at the family’s dedication to Michael and how well it’s working.

“I sit back in total amazement and wonder how could they do it?” says Cora Martin, a neighbor and former gerontology teacher at UNT. “A lot of times, Betty has help from her children. But sometimes, they’re all gone, and it’s all on her shoulders.”

The Raschs live a modest life that focuses mainly on Michael’s daily needs. Money is not something the family talks about, although mother and son depend mainly on Medicare, Medicaid and Social Security. Outside income is a concern because earning too much would threaten Michael’s access to care.

“Michael’s students are required to donate his tutoring fees to a local food pantry,” Betty says. “Medicaid covers all his medical equipment. Any income could interfere with his eligibility.”

While his mother is his primary caretaker and closest companion, Michael’s four siblings and their families take turns helping her. Every two years or so, a family member will move home from as far away as Africa or Central America.

“We resigned our teaching jobs in Chicago in 1994 and moved to Texas to help,” recalls brother Ivan Rasch, who is a year younger than Michael. “Both of my children grew up seeing Michael’s treatments. They were not afraid of his equipment. They’d sit on the footrest of his wheelchair and ride through the house.”

When not assisting his mother or Michael, Ivan taught in the Flower Mound school district for several years. But in 1999, he and his wife decided to become teachers at a missionary school in Nigeria. The couple was teaching in Ghana, until they returned recently to help with Michael.

Younger sister Kendra Crowther helped from 1999 until 2006, and older brother Jeffrey Rasch pitched in after that. Brother Kevin Rasch and his family make regular visits from Honduras to help, too.

Such dedication might seem unusual, but not to the Rasch family. These are the people who stop to help when a stranger’s car breaks down along the highway, says Jennifer Rasch, who is married to Ivan.

“They will drive complete strangers 40 miles to get gas,” she says. “They are an amazing family. They stop what they’re doing and meet the need. I feel honored to have married into a family like this.”

Michael is the family’s top priority, although college students also are hired to oversee his extensive breathing treatments. The household buzzes around Michael’s room and there’s never any discussion about this being a burden.

“Sometimes, families will find a nursing home or someplace that will assist them,” Betty says of other Duchenne patients. “As long as anybody is able-bodied in our home, we wouldn’t do it.”

The Raschs are not a typical American family, starting with the fact that four of the children were born in Nigeria when their parents were missionaries.

For nearly 30 years, Betty and her husband, Walter, who was known as Wally, served as missionaries in Nigeria for the Lutheran Church-Missouri Synod.

The birth of Michael, their second son, coincided with the start of a civil war that forced the family to return temporarily to the U.S. Michael adapted to the abrupt changes in his young life but also developed a habit that caught his family’s attention.

“Michael fell a lot and would hit the same spot in the middle of his forehead,” Betty recalls. “There was something wrong with his balance. We all sensed that some condition was causing it.”

Nigerian doctors could not figure it out. During a U.S. trip, doctors in Los Angeles witnessed Michael’s inability to climb stairs and tested him for Duchenne. The diagnosis was hidden by the fact the disease normally strikes 75 percent of the boys in an affected family.

“Of our four boys, only Michael got it,” Betty said. “The doctors decided it was a random genetic mutation.”

His mother remembers feeling devastated that her 5-year-old son might not have a chance to grow up. “He looked like a very healthy child. I ran upstairs and cried out: ‘Lord, Lord, why would this happen?‘” she says.

In prayer, Betty found acceptance.

“I was given overwhelming peace about it,” she recalls. “I learned to accept it and was reassured that God would give me what was needed or the people who would assist me. It has worked out that way.”

The family returned to Nigeria with Michael, who was always treated like just another kid. He joined his siblings and other missionary children at a boarding school about 15 hours from their village. He was forced to leave in the sixth grade, when his wheelchair couldn’t reach his second-floor classroom.

Michael spent four years living in a village house lacking modern amenities. His home-schooling followed a University of Nebraska curriculum.

“It was somewhat lonely, but I played with the kids in the village,” Michael recalls. “There was a close community of missionaries living near us. But it felt strange to see the parents and not their kids.”

The family was reunited when the Raschs agreed to become house parents at the boarding school. After four or five years, Michael decided he was ready to leave for college. He chose Missouri because its Columbia campus was advertised as wheelchair-friendly.

But, eventually, he needed his brothers to help him finish. Jeffrey and Ivan enrolled at Mizzou and became Michael’s roommates while finishing their own degrees. Michael earned his bachelor’s in 1990 at 23. His proud parents journeyed from Africa to attend his graduation that winter.

As the family drove him back to the campus, the car hit a patch of ice and slid off the road. Michael’s head struck the dashboard, flattening his face. He also had a broken shoulder, leg and facial bones.

“When we got him to the hospital, they said he wouldn’t live,” recalls Betty, who was not injured. “They thought the membrane between his nasal passage and his brain was severed. They were waiting for him to die.”

The doctors didn’t realize that Michael always defied expectations. His nose popped out after five days and other injuries mended after three months in the hospital.

Unfortunately for the Rasch family, their patriarch was found to have untreatable cancer shortly after the accident. Wally Rasch died three months after his diagnosis at age 54.

Betty and Michael moved to Denton, where Kendra was a TWU student. They shared her apartment near the campus for two years after Michael rejected the idea of teaching special education. He was concerned he couldn’t control the class.

Looking for something to do, he began reading one of his brother’s calculus books. Until then, Michael didn’t even know he was good at math. His mind changed when he achieved a perfect math score on the graduate entrance exam.

To get his master’s, Michael needed someone to help him inside the classroom, particularly taking notes and solving problems at the chalkboard. Betty got the job.

“I didn’t know if it was a math symbol or what it was,” she recalls of her scribblings.

Like dancers of a complicated waltz, mother and son adapt to every change the disease throws at them. As Michael becomes more and more dependent on his caretakers for his physical needs, his mother encourages his mind to stay free.

“I like to say Michael is my brain, and I am his hands and feet,” she says with a laugh. “It sounds funny, but I mean it.”

Most days, Michael sits at his computer for about four hours, scanning Facebook and other social media. His 150-plus contacts keep him in touch with their lives and the day’s events. He mostly reads whatever they pass along and doesn’t search for more.

“I can probably type eight or nine words a minute,” he says. “But I seldom send email.”

Other than his facial muscles, Michael can only manipulate his right index finger, which he uses to move a sensitive computer mouse. Jennifer, his sister-in-law, helps keep the muscles limber by bending his finger back until it almost touches his hand.

Physical therapy was a periodic part of his life until five years ago when the treatments began to feel like a waste of time. “They were too painful for him,” says his mother.

Michael doesn’t see doctors much anymore. His annual visit to see a Duchenne specialist in Dallas became too tiring. A couple times a year, he visits a Denton pulmonary specialist, who has no other Duchenne patients.

Rather than focus on his medical issues, Michael would rather concentrate these days on the subjects he enjoys. They are ever-changing.

“I have an aptitude for learning languages so I’m working on German now,” says Michael, who also plays chess and enjoys chatting with visitors about their interests.

Other than going to church, his most satisfying outings are to local garage sales.

On the recent search, Michael scans the tables of used goods, noting the toys and knickknacks that do not interest him. Despite his firm belief in recycling, including the clothes he wears, Michael won’t buy anything he can’t use.

“No CDs? No French, German or Spanish books?” he asks hopefully at one sale. “I guess I’ll have to keep looking.”

Information from: The Dallas Morning News, http://www.dallasnews.com


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