A Life Full of Learning

A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams

by Kathleen Hagan on January 9, 2014 - 9:31am

Quest Winter 2014

Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19. 

In the early years following Raymond Walter’s diagnosis with Duchenne muscular dystrophy (DMD), the Walters turned to MDA for help with medical copays and insurance. Today, Raymond values MDA as a dedicated source of practical care guidelines and emotional and moral support for all “individuals and their families who flourish despite muscular dystrophy.”

Accomplishing so much at such a young age is impressive by any standard, but Raymond’s journey to get to where he is today has been especially remarkable, given the challenges he’s had to overcome. In addition to his genius-level IQ and strong work ethic, he has Duchenne muscular dystrophy (DMD). But having a degenerative muscle disease hasn’t stopped him from excelling and succeeding in various academic environments — thanks to the incredible support of his family and friends.

Bright beginnings

Although Raymond notes that he was an intelligent child, he doesn’t feel like he stood out among his classmates in any way until the fifth grade. At that time, he was rather advanced in mathematics, he says, and was more interested in eighth-grade algebra than the current course work he already had mastered. However, the school he was attending in New Jersey refused to advance him. That changed the next year, when the Walter family relocated to Mountain Home, Ark., where Raymond was quickly placed in the eighth grade.

Raymond recalls: “When I moved to Mountain Home, I met with the junior high school counselor, Dennis Anderson. He asked me why I wanted to be in the eighth grade. I replied, ‘Who am I going to talk to about nanotechnology in fifth grade?’ He said, ‘You won’t find anyone in eighth grade to talk to about that either!’”

When it became clear that Raymond was academically gifted and would be pursuing a college education, his father, Hal, and his mother, Gail, realized that they needed to figure out what college would look like for their son. “Once you find out your child has Duchenne [muscular dystrophy], you do your research, and it’s not hard to realize what your next couple of decades will be like,” Hal says. For the Walter family, a lot of that research came from MDA, which Raymond considers to be “an essential resource for medical information concerning Duchenne muscular dystrophy.” 

Recognizing that Raymond would need extra physical assistance, Hal began to disassemble the small businesses he owned in New Jersey in order to move to Arkansas to farm and eventually become Raymond’s primary caregiver when the time came for him to go to college. And at the rate Raymond was making his way through primary and secondary school, Hal knew that time was coming sooner rather than later.

Transitioning to college

When Raymond graduated from Mountain Home High School at age 14 and entered the University of Arkansas at the age of 15, he and Hal were transitioning into a whole new world. As a triple major in mathematics, physics and economics, Raymond was excelling academically and embracing his studies, and Hal was beside him every step of the way, taking him to class, the dining hall and back to the dorm.

“Ray is very dedicated to mathematics and is 100 percent devoted to all of his academics,” says John Ryan, a professor of mathematics in the J. William Fulbright College of Arts and Sciences at the University of Arkansas and Raymond’s doctoral adviser in mathematics. “I’m very impressed by his abilities. I have given him some very challenging things to do, and he’s always proven that he’s up to the challenge. He is one of the top students we’ve had.”

Ryan says another thing that has impressed him about Raymond is his sense of leadership. “Although he is the youngest one in the group, he has been sending emails to the other three Ph.D. students, encouraging them to meet and interact and talk about the work that they’re doing,” he says. “It’s brilliant.”

However, college life did not come without its challenges. One of the issues Raymond and Hal encountered was figuring out where they would live. Because Raymond has DMD, he relies on his father to be his primary caregiver and live with him on campus during the week to help him navigate the university environment. Meanwhile, his mother lives on the family farm more than 100 miles away and works as a nurse anesthetist.

The University of Arkansas has specialized housing available for students, but getting in touch with someone who could help Raymond and Hal secure a space in an on-campus dormitory was not an easy task. It was by chance that Gail happened to mention the difficulties they were having with housing to a colleague, who was able to put them in contact with the right person.

“A lot of what we went through [in terms of housing] was new to the university,” says Hal. “First off, they rarely have prodigy students who are underage, and then having a prodigy student that needed 24-hour care … They really needed to think on their feet.”

Raymond and Hal eventually settled into an accessible suite in a freshman dorm, and it has been their “home away from home” ever since. Other aspects of disability access at the university that they utilize include the Center for Educational Access, accessible restrooms and campus transportation. “The university is very accommodating, but you need to advocate for yourself,” Raymond says. “They will quickly facilitate assistance once they know something is needed.”

Lessons learned

In addition to all of the learning that was taking place inside the classroom, Raymond discovered a valuable lesson during his first year of college: Physical therapy is very, very important for students who have DMD. “I didn’t get any therapy during my first semester of college, and that taught me just how important physical therapy is,” he says. “As a student, you need to be in good health.”

As Raymond’s “expediter,” Hal says it is his duty to make sure that Raymond can put his needs as a student first and not worry as much about any challenges that arise from having DMD. “You really need an advocate and an expediter to take care of all the contingencies that arise when you’re trying to navigate all your needs at an institution where about 95 percent of the students are physically normal,” Hal adds. “That’s where I come in.”

Raymond appreciates his father’s assistance, as it helps him stay focused and keeps him on track toward achieving his goals. “I’ve been a student for the last 10 years,” he says. “But it’s important to have an end in mind; it’s important to have a goal to pursue.”

Raymond’s ultimate goal is to pursue advanced research in mathematics or physics. “Exactly how I’ll go about that is not yet determined,” he says. “I hope to work as a postdoctoral researcher for a few years, and then perhaps my occupation would involve research — possibly working with computer simulations in industrial settings.”

However, Raymond notes that time is scarce for him — the average life expectancy for someone who has DMD has increased in recent years, with young men living into their 20s, 30s and sometimes beyond — so his pursuit of academics is accordingly efficient. According to Hal, Raymond studies 10–12 hours every day, seven days a week, making every minute count. “The brain will be the last thing to go in an individual with DMD, so why not take advantage of it or exercise it?” Hal asks.

Breaking the mold

Raymond wasn’t looking to draw attention to himself when he graduated from college this past May, but by the time he received his diploma, he had become a bit of a local celebrity in his college town of Fayetteville, Ark., according to Ryan.

“He got quite a bit of media coverage,” Ryan says. “It was exciting to see others recognize his accomplishments and turn him into a bit of a celebrity. It was well-deserved.”

Looking back on Raymond’s college career, “there have been so many milestones,” Hal says. “But the commencement and the resulting stories were probably the highlights. I, as a spectator, could see that it was very satisfying for Raymond to break the mold.”  

Making the transition from high school to college can be challenging for any young person. It can be especially trying for students with disabilities, as questions of access — related
to both academics and disability — arise throughout their university careers.

Raymond Walter, 19, who has Duchenne muscular dystrophy, has successfully completed the transition to college thanks to the help of his father, Hal, and the faculty and staff at the University of Arkansas in Fayetteville, Ark. Here are some tips Raymond offers on how to transition to college with a neuromuscular disease:

Plan ahead. “It makes a huge difference to plan ahead [because there are a lot of factors to consider],” Raymond says. “My father had 10-12 years to plan and figure out how we would make going to college work, so there weren’t too many surprises.”Be proactive and be a self-advocate. “You need to take matters into your own hands and find solutions to your problems. Your needs are likely going to be different [than other students],” he says.

Take advantage of on-campus resources. The Center for Educational Access at the University of Arkansas helped Raymond with his requests for time extensions on his exams, because he becomes more quickly fatigued when he writes and types. Another service offered by the Center was a personal note-taker, which Raymond acknowledges may be helpful for others with muscular dystrophy — although he did not need to utilize one.

Be a student first. “Don’t get bogged down with worrying about disability,” Raymond says. “Students with disabilities are first and foremost students. The disability part should be second.”

Hal Walter said goodbye to his business endeavors in order to be a full-time caregiver for his son, Raymond, who has Duchenne muscular dystrophy. In addition to being a caregiver, Hal also serves as an expediter and advocate for his son in a university environment. But it’s not always easy, he says. Here are some tips Hal offers for others in similar circumstances:

“The main advice from the stance of being an expediter is to figure out what you can and cannot do yourself,” Hal says. “Identify problems [things you cannot do yourself], seek solutions, execute and plan. You need to be able to count on yourself to provide services — or find answers — for your child.”

Be prepared for — and OK with — being bored. “It can become a psychological burden at times, being a full-time caregiver with not much to do, so you need to have an outlet or hobby,” he says. “Reading, learning, exercising … whatever you can do for yourself, do it. Otherwise you will become agitated with being bored.”

Keep your eye on the ball and stay focused on your purpose, but don’t forget about your own personal needs. “My purpose is being at school with Raymond, but I also need to find ways to entertain myself and be productive,” Hal says.

As students with neuromuscular disease transition to college, finding ways to become increasingly independent will benefit their changing lifestyles. For this reason, MDA’s Transitions Center website offers extensive educational resources for teens and young adults with neuromuscular diseases.

Among the many resources found on the site are college planning guides; information about scholarships and financial aid; advice about finding accessible transportation, housing and recreation; career resources; and peer-to-peer tips. The Transitions Center also offers insightful webinars, covering topics like, “The Road to College: A GPS for Students with Neuromuscular Diseases,” and “Riding Solo: Living Independently in College with a Neuromuscular Disease.”

Kathleen Hagan is a Chicago-based writer.

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