Brandon Johnson may not be able to “walk” across the stage tomorrow at Crestwood High School, but being in a wheelchair and on a ventilator hasn’t kept him from graduating with a 3.8 GPA – ranking 14th in his class – and inspiring just about everyone he meets.
Brandon was born with a degenerative muscle condition called spinal muscular atrophy, which weakened his muscles – including those related to breathing and digestion – and limited his arm movements.
Doctors initially only gave him 3 years to live due to uncertainty about which type of spinal muscular atrophy he has.
“He has a rare underlying genetic condition causing an abnormality in how a specific protein is made. The nerves that control muscles need that protein in order to work. Since the nerves don’t have that protein, they cannot control the muscles,” said Dr. Catherine Kelly-Langen of Akron Children’s Haslinger Family Pediatric Palliative Care Center. “As a result, the nerve cells and muscle cells shrink and don’t work, causing progressive weakness until they cannot work at all.”
Brandon has relied on a ventilator to breathe since the 8th grade and has done much of his schooling in a home-based virtual setting.
“As his body has become weaker, Brandon has had to face decisions about how to maintain his schooling while trying not to get sick and how to maintain friendships while he is less able to get places on his own,” Dr. Kelly-Langen said.
In 2011, Brandon had to make a tough decision about whether to get an artificial airway placed.
“The alternative was to gradually get weaker until he couldn’t breathe on his own anymore,” Dr. Kelly-Langen said. “Even though living with a huge amount of technology and maybe not being able to talk again was hard to face, he chose to go ahead with the surgery and he has thrived.”
Brandon takes it all in stride.
“Despite the wheelchair and the ventilator, my mouth and my brain still work perfectly,” Brandon said. “I am a big believer in the mantra, ‘you can’t waste any time in your life.’”
“I knew immediately that Brandon was a gifted writer, though at first he was skeptical about his ability to write well,” said Nicole Robinson, outreach manager at Wick Poetry Center. “He started to enjoy himself right away as we discussed a few different poems we read together.
And Brandon means it when he says he doesn’t want to waste any time in his life.
He’s already accumulated an incredible 36 hours of college coursework, chipping away at it since he was a junior in high school.
In the fall, he’ll attend Kent State University, where he plans to major in psychology and creative writing. He has accepted 2 scholarships – an academic scholarship from Kent State and a $1,500 scholarship from Wick Poetry Center.
Finding a loving family
Ronna and Donn Johnson met Brandon when he was 2 and living at Hattie Larlham, a residential center for children with special medical needs. They became his foster parents, and later adopted him when he was 8.
Ronna admires his ability to push himself and his tendency not to whine or complain.
“Considering we didn’t expect him to live to be 3 and then to do all the things that he’s done, he’s a remarkable young man,” said Ronna. “He doesn’t see himself as disabled and he never complains about the many challenges he faces.
One day he wants to work at Akron Children’s palliative care center and do art and music therapy with kids who have similar types of conditions.
Brandon knows what to expect, as he has spent the past 2 years working with the staff in the hospital’s Emily T. Cooper Welty Expressive Therapy Center, both as a patient and a volunteer.
He’s created beautiful artwork and inspiring poetry and songs. Most importantly, he shows other patients that the sky is the limit, if you have aspirations.
“Brandon is a great idea man,” said music therapist Sarah Gaither. “We’ve enjoyed writing songs together and he’s a great help in the center as a volunteer, helping patients and cleaning instruments.”
Molly Kohut, an art therapist at Akron Children’s Hospital, agrees.
“Brandon has been an absolute pleasure to work with in the expressive therapy center,” said Kohut. “He is both creative and talented, and he has helped facilitate expressive therapy groups and fulfill administrative duties. Brandon is an inspiration to our patients and families, and we appreciate his gift of service.”
Brandon also also helped train medical students at Northeast Ohio Medical Center the past 3 years.
“Brandon speaks to the seniors taking a disability class,” said Ronna. “He gives the patient’s perspective, what it is like. We have them to our house and Brandon shows them all his stuff, such as his lift, his chair, basically all the adaptations and accessible stuff he needs to use throughout the house.”
While Brandon has a bright future, his graduation ceremony tomorrow offers a time to reflect on just how far he’s traveled on a journey that has had many bumps in the road.
“I am so proud of him, not just for graduating but for being such a great person,” said Ronna. “There’s a kindness and naivete that hasn’t really left him even though he’s 19 years old.”