Bampoh smiles in the face of adversity yet again
Freshman finds support in Bethel atmosphere.
By Larkin De Haan | Royal Report
As finals week approaches, one can observe a tangible loss of enthusiasm among Bethel University students. Tears fall, shoulders slump, sweatpants emerge from the depths of dressers, and caffeine is substituted for much-needed sleep.
While many students struggle to endure the final days before Christmas break, impending group projects and final exams do not discourage one individual in particular. Despite the December rush, you can find him motoring around campus in his electric blue, power wheelchair wearing a navy Bethel scarf and pair of gloves, as always.
As others hurriedly fling their backpacks to the floor outside Monson Dining Center and head in for a quick bite, he enjoys a peaceful lunch in the Brushaber Commons near the large windows that overlook Lake Valentine. As others gulp down strong coffee and frantically finish papers on their MacBooks, he works on his iPad with a steady sense of purpose, using the tray of his wheelchair as a desk and occasionally sipping from his orange water bottle.
As others smile half-heartedly and fight to keep their lids open, his genuine beam and sparkling, dark eyes continue to inspire everyone he interacts with. As others claim they do not think they will survive finals week, he thanks God for allowing him to survive a genetic disease that has taken the lives of thousands.
His name is Benard Bampoh, and he was born in Ghana, West Africa with spinal muscular atrophy (SMA). In addition to the numerous challenges he has already overcome in his eighteen years of life, Bampoh will complete the first semester of his freshman year at Bethel University next week.
According to an organization called Cure SMA, spinal muscular atrophy is a disease that can affect any race or gender that “robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe.” SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier.
SMA is the number one genetic cause of death for infants, and there are currently no approved methods to treat individuals with this condition. However, there is reason for great hope. Cure SMA claims, “We know what causes SMA and what we need to do to develop effective therapies, and we’re on the verge of major breakthroughs that will strengthen our children’s bodies, extend life, and eventually lead to a cure.” Although individuals with SMA have difficulty performing the basic functions of daily life, this condition does not affect their ability to think, learn, and build relationships with others.
Bampoh, who graduated from Century High School in Rochester, Minn., in June of 2014, and has nearly completed his first semester at Bethel, has celebrated both academic and relational success this year. A double major in computer science and communication studies with an emphasis in Rhetoric and Public Influence, Bampoh plans to graduate in the spring of 2018 and eventually pursue a law degree.
Bampoh said the best part of his Bethel experience so far has been the supportive, fostering atmosphere. “Many students have shown me genuine kindness and have made an effort to establish friendships with me. This seems like something small, but it means a lot,” he said. “I really feel like I belong here.”
While Bampoh has thrived academically and relationally at Bethel, he has been challenged physically. Bampoh needs daily assistance with tasks such as using the restroom, preparing his meals, opening the doors to his classrooms, and retrieving items from his backpack.
Bampoh’s mother and father have full-time jobs, and since he is still in the process of becoming a United States citizen, he did not qualify to receive a government-funded Personal Care Assistant (PCA) to help him at Bethel. So in June, Bampoh’s grandmother, Bernice Quartey, came to the United States from Ghana, West Africa and spent the majority of the first semester assisting him with his daily physical needs on campus.
When Quartey’s six-month visa expired in early December, she had to return to West Africa. “We knew she could only be here for a short period of time, and I’m very glad she was able to assist me through my transition to college,” Bampoh said. However, he was concerned about who would provide him with physical assistance for the remainder of the first semester as well as the second semester.
“I’ve always had to depend on people to help me with things, so there wasn’t really any fear involved,” Bampoh said. “Different people have different ways of solving problems as they help me, so getting used to that was the only thing I was concerned about.”
That is where Natalie Beazer, Bethel’s director of Disability Resources and Services, stepped in. In the middle of October, Beazer created a job position for a nursing major, based on Bampoh’s needs. After receiving few responses, she opened it to any student. In late November, Sam Murphy, a junior psychology major from Willmar, Minn., was hired as Bampoh’s assistant.
“The first time I met Sam, we instantly connected,” Bampoh said. “He’s into music just like I am, and he has a very gentle nature about him. I knew we would work well together.” While both Murphy and Bampoh attend classes during the day, they spend time together almost every morning. “We hang out before class, and then we arrange when and where we should meet again throughout the day,” Bampoh said. “We approach the days one step at a time.”
Murphy had positive things to say about his experience with Bampoh so far, as well. “Benard is very vocal and very good about explaining his physical needs to me as they arise,” he said. “I’m completely new at this, but he is very patient with me.”
While the physical challenges Bampoh has faced at Bethel are definitely noteworthy, they do not compare to the adversity that has confronted him and his family in the past.
Bampoh was born with spinal muscular atrophy in Ghana, West Africa on September 17, 1996. In 1998, his brother Enoch was born with the same condition. Yet again, in 2000, his brother Caleb was also born with SMA. “None of us were ever able to walk, but our parents still tried to find a means to take care of us,” Bampoh said. “However, this was challenging with the limited resources in Africa, so my parents would carry us everywhere and set us down on couches or chairs once we reached our destination.”
Throughout this time, Bampoh’s parents knew their sons were not progressing normally. However, many of their friends and family members reminded them that all children develop at different rates and advised them to wait a few years to see if their sons started crawling before taking further action.
Since Bampoh was still unable to crawl when he turned four years old, his parents took him to a doctor in Ghana for a muscle biopsy. “Since my physical limitations were similar to Enoch and Caleb’s and the doctors didn’t want them to go through all of the testing I did, they used the conclusions from my muscle test to treat my brothers, as well,” he said. However, the doctors diagnosed the three brothers with the wrong disease: Duchenne muscular dystrophy.
According to Medline Plus, while Duchenne muscular dystrophy is similar to SMA in that it is an inherited disorder that involves muscle weakness, it immobilizes victims much more quickly. “We didn’t get the right treatment for our condition, and that ended up taking more of a toll than we first thought it would,” Bampoh said.
When Bampoh was in second grade, his dad bought plastic chairs for him and his brothers. “My chair was blue, Enoch’s was red, and Caleb’s was green,” he said. “Now, our parents could carry us in our chairs and set us down wherever they needed to.”
When Bampoh was in fourth grade, the three brothers received their first wheelchairs from a European organization that refurbished old chairs for those in need. “Receiving these wheelchairs was very sensational because I had never been able to move so much on my own free will before,” Bampoh said. “Just thinking I could go somewhere and actually being able to do it without help took a while to get used to.”
Bampoh and his brothers were excited about the wheelchairs for two reasons. First of all, “because they let people know about the severity of our condition. For the first time, people began to realize that we weren’t like everyone else, even if we seemed like it,” he said. Second, “they prevented our classmates from playing too roughly with us. Our wheelchairs were bigger than all of the other kids’ chairs, so they couldn’t tip us over anymore,” he said.
At this time, Bampoh’s mother was finishing her master’s degree in chemistry at the University of Cape Coast in Ghana. Later, she received a scholarship, teaching assistantship, and opportunity to pursue a Ph.D. in chemistry at Syracuse University in N.Y. She moved to the United States alone to pursue her education and soon realized American technology and healthcare had much more to offer her sons than did Ghana.
SMA prevented the Bampoh boys from having the energy to cough, and this eventually caused an infection in Enoch’s lungs. In 2007, he passed away in his sleep, and this event further motivated Bampoh’s parents to move him and Caleb to the United States.
A few months later, Benard, Caleb and their father finally moved to Syracuse, but just three short weeks later, Caleb died in the same way Enoch had six months earlier. “It wasn’t easy either time,” Bampoh said. “It was just as traumatizing the second time as the first. But we held on to the hope that we would see them again and that they were free from physical suffering in Heaven.”
Bampoh said it would be wonderful to still have his younger brothers here on earth, but life wouldn’t have been easy for them. His mother was allowed to stay in the United States because she was attending Syracuse; however, none of her family members were U.S. citizens, and their father’s six-month visa would have forced him to travel back and forth between Ghana and America.
In other words, if Enoch and Caleb had survived, Bampoh’s mother would have been singlehandedly taking care of her three sons while simultaneously earning a Ph.D. “My parents and I know that despite the hardships, God was working on our behalf and not against us,” Bampoh said. “Today, we look at everything and see that this was really God’s way of helping us cope.”
As a result of Enoch and Caleb’s deaths, Bampoh said his doctor and pulmonologist in Syracuse worked even harder to maintain his condition and preserve his health. While attending sixth grade at Living Word Academy in Syracuse, Bampoh got to use a power wheelchair for the first time, as one of the school faculty members had an elderly relative who no longer needed it. Bampoh’s parents began to work with a company that manufactures wheelchairs, and eventually were able to purchase him a power wheelchair of his own.
As an international student, Bampoh’s mother had only six months to find a full-time position after completing her doctoral degree in order to keep her visa. Although she wanted to focus on research, she applied for every job she was qualified for, knowing that her husband and son were depending on her.
Five months after graduation, the last place Bampoh’s mother applied became the first place that responded: the University of Minnesota Rochester. “We were down to one month before my mom would lose her visa, so God was definitely helping us on that part,” Bampoh said.
In 2012, Bampoh and his parents moved to Rochester, where his mother began her career and he eventually completed eleventh and twelfth grade at Century Senior High School. Bampoh’s father is a pastor, and after unsuccessfully trying to start a church in Rochester, he moved to Maryland to pursue a leadership role in a church there.
Meanwhile, Bampoh and his mother began working with Mayo Clinic and discovered a company that designed custom wheelchairs. The owners examined Bampoh, and the first thing they noticed was that he had long outgrown the power wheelchair he had been using since seventh grade. They knew he needed a quieter chair with more padding and support, and they set up a payment plan for his family that allowed them to afford the type of chair he needed.
“Receiving this wheelchair was very timely,” Bampoh explained. “After every five years, insurance can help pay for a new wheelchair. My parents and I knew I needed a new chair, but we didn’t know how to go about it and had other, more important things to take care of.”
Meanwhile, a friend of Bampoh’s mother had a son who was attending Bethel University, and she encouraged him to visit campus. During their visit, Bampoh and his mother found Bethel’s atmosphere peaceful and welcoming. “It is a small college, but it didn’t feel crowded, so it was a great combination of the two,” Bampoh said.
“On the way back home from that visit, my mom and I decided I would go to Bethel,” he said. “We liked it that much.” So, in August of 2014, Bampoh and his mother moved to Arden Hills so he could begin his Bethel journey.
Today, when asked about his greatest accomplishments, Bampoh mentions both his academic and musical abilities. “Before we moved to the United States, I was not focused on school,” he said. “But over time, I started to put in more effort and see improvement. Today I’m more dedicated to schoolwork, and I have been seeing very positive results.”
Bampoh said that his other greatest accomplishment is having developed a taste for music and the abilities to play both the piano and guitar. His mother started teaching him to play the piano when he was in sixth grade, and he was asked to fill a temporary pianist position for his middle school chapel services that same year. “I didn’t realize it then, but that was the first time someone else depended on me,” Bampoh said. “That was the first time I was able to take on a responsibility and offer assistance to someone when they needed it.”
Since then, Bampoh has also learned to play the guitar and played both instruments for his high school’s worship team. As he reflected upon these experiences, Bampoh said he thinks there were many times that he was limited from playing as well as he could physically, although he knew what needed to be done mentally. “From my perspective I wasn’t making good music or playing to the best of my ability, but others told me it was inspiring to see me on stage. That’s when I realized for the first time that God uses whatever effort we give Him,” he said.
Bampoh offered two pieces of advice for other physically handicapped individuals relating to this topic. “Don’t create barriers for yourself, but at the same time don’t neglect your limitations,” he said. “Always remember that God values you not for what you can accomplish, but for how you shine His light within the circumstances in which you find yourself.”
The past few weeks have gone very smoothly for Bampoh and his new caregiver, Sam Murphy. However, since Murphy plans to study abroad during second semester, the search for a caregiver for Bampoh is beginning once again. If the position is not filled, Bampoh will have to rely completely on his friends and other Bethel students and faculty members for daily assistance.
Despite the uncertainty he faces, Bampoh remains positive and confident. “I know there is no challenge I will ever face that hasn’t been brought upon another human before, and I know God will never give me anything more than I can handle,” he said. “All we have control over in this life is the here and now, and while it is good to plan ahead, we must never take for granted the gift that is the breath of life and the time and people we have in this moment.”
Today, despite the inevitable stress the end of the semester brings, Bampoh said the assurance that God has brought him this far for a reason is what keeps him smiling. “Every day I have another chance to live out God’s plan and to trust that He knows what He is doing even when things don’t seem clear,” he said. “I just have hope that every little detail, even the ones I might consider insignificant, will eventually add up to fulfill what God has planned for me.”