In June 2020, Austin Gossard, 16, was out to dinner with his family when he suddenly had difficulty holding his fork.
It came out of nowhere.
He had no history of illness or chronic conditions.
The next day, he had trouble walking and his leg went numb. He and his family met with doctors near their Newaygo, Michigan, home and scheduled follow-up appointments.
But then on July 5, 2020, his condition quickly worsened.
Austin’s mom, Heidi Gossard, found him lying on the living room floor, unable to speak.
“It was completely out of the blue,” Heidi said.
Austin had been walking with difficulty for a couple days and his hands had been shaking. He had impaired vision, too, but didn’t tell his mom because he didn’t want to “freak her out,” he said.
His care team ordered an MRI and spinal tap and started him on steroid injections. He spent about a month in the hospital that summer.
Friends and family waited for answers.
Then, in November, doctors diagnosed Austin with relapsing-remitting multiple sclerosis, an autoimmune disorder of the central nervous system. The body starts to recognize its own proteins as invaders and attacks them.
When the myelin proteins are attacked, it slows the signals traveling from nerves and cells in the brain and spinal cord to the rest of the body.
Symptoms at onset can vary, but doctors look for new, persistent neurological changes such as weakness in an arm or leg or sensory changes. Some people show sudden onset loss of vision, too.
“We were so glad we got him in to be evaluated at the children’s hospital,” Heidi said.
Regaining movement and vision
After conventional therapies didn’t allow for notable improvement in Austin’s symptoms, he underwent plasma exchange, a process in which the patient’s own plasma is separated from the blood and replaced with donor plasma.
He underwent this treatment every other day for 10 days. On the third day, he could see again.
“We would write notes on the white board in his room,” Heidi said. “I wanted him to be able to read them so badly. And then one day he could.”
Austin spent the next few weeks back and forth between Helen DeVos Children’s Hospital and Mary Free Bed Rehabilitation Hospital, where physical therapists helped him re-learn to walk.
He still had trouble with his vision, as well as encountering other challenges.
“He couldn’t feed himself and had to teach himself how to eat a cookie or French fry,” Heidi said. “And he refused to video chat with friends because he was still having trouble seeing.”
After several weeks of physical therapy, Austin could once again walk and talk—and his vision improved, too.
He then returned home, continuing physical therapy on an outpatient basis for months.
‘This disease doesn’t define me’
Fast forward a year and a half.
Austin’s high school friends can barely tell he has multiple sclerosis.
“You would never know he was sick,” Heidi said.
He does miss some school because of frequent stomachaches and anxiety, but he’s working with Adelle Cadieux, PsyD, a pediatric psychologist at Helen DeVos Children’s Hospital, on techniques to manage the anxiety.
“Being diagnosed with MS comes with its own adjustment, but add additional COVID-19 restrictions, and that can make coping so much more challenging,” Dr. Cadieux said.
“Accessing his support system to help adjust to the diagnosis was not easy for Austin,” she said. “Keeping in contact with friends and engaging in social activities was a necessary part of coping and a necessary part of staying connected to the enjoyable aspects of his life.”
Austin worked hard to address the multiple ways that anxiety and stress have been impacting his social, emotional and physical well-being, Dr. Cadieux said.
He has been doing well using breathing techniques and visualizations when anxiety takes over.
“I just want to be treated like everyone else,” Austin said. “This disease doesn’t define me—and I don’t want it to.”
He and Dr. Cadieux meet virtually on a regular basis.
They worked together to identify the stressors and developed a plan to address the stress contributing to his pain, so that he could attend school more regularly.
“Austin’s anxiety can be debilitating at times, he can’t even breathe,” Heidi said. “Dr. Cadieux has done wonders for Austin, and he can now handle it all much better.”
Support from his village
There are a lot of things Austin is learning about his condition.
He and his mom connect regularly with Harlori Bains, MD, a neurologist at Helen DeVos Children’s Hospital, to check on progress.
“She’s a rockstar,” Heidi said. “Dr. Bains is not only invested in the treatment of this condition and making life better for these kids, but you can tell she just cares.”
Dr. Bains explained the importance of exercise, physical therapy and keeping the body moving. Since Austin has lesions in his brain and on his spine, he needs to take good care of his body, she said.
“She pushed for Austin to be on the treatment he’s on right now,” Heidi said. “And that is the best medication to treat the severity of his illness.”
With new treatments, significant progress has been made in preventing additional relapses in pediatric and adolescent multiple sclerosis patients, Dr. Bains said.
“Austin has put in so much hard work for his recovery, both physically and emotionally. He is doing very well,” she said.
Austin’s recovery from prior attacks are not solely a result of medication.
He has also benefited from his strong immune system, the bravery he has shown in working with inpatient rehabilitation and outpatient therapies, and the addition of psychology to help him work through his anxiety, Dr. Bains said.
Support from his village of family and friends has been instrumental, too.
“Austin is going to do very well through the remainder of high school and beyond,” Dr. Bains said. “I hope he knows that he has a doctor who is cheering him on.”
The road ahead
Austin recently completed the first segment of driver’s education, so he can now drive with another adult in the car.
“He’ll tell me when he’s not feeling well enough to drive,” Heidi said. “Sometimes he only goes to school a couple days a week depending on how he’s doing.”
He has a walker, a wheelchair and a cane, too, but he doesn’t use any of them.
“He doesn’t want to be different,” Heidi said.
He is now on a disease-modifying therapy, natalizumab, which is an intravenous infusion given every 28 days in an infusion center.
The treatment, approved for use in relapsing-remitting multiple sclerosis, is currently FDA-approved for ages 18 and up. Austin’s team received special approval for him to use the treatment.
The goal is to slow progress of the disease and prevent new lesions or new attacks. The treatment will also work to prevent migration of “bad” white blood cells across the blood-brain barrier, and to keep inflammation at bay, according to Dr. Bains.
Other than that, he’s living life like any normal teenager.
His new thing is playing virtual reality games. His favorite games are Pavlov Shack Beta or Guerrilla Tag.
“You are a gorilla without legs, and you climb around the map,” Austin said, strapping the oculus on his head with controllers in each hand.
“I’ve really been getting into VR,” he said. “It’s a lot of fun.”
He plays games live and competes with friends virtually on a regular basis.
He also works at Newaygo Elementary School’s after-school program, where he mentors first-, second- and third-graders. He helps with art and craft activities and plays outdoors with the kids. He’s active in youth group at Grace Bible Church, where they play tag and basketball and enjoy other engaging activities.
Austin has also talked about running track. He’s a fast runner, Heidi said, but his condition can get in the way, as he’s quite sensitive to heat.
“We’re incredibly proud of Austin,” Heidi said. “He has his entire life ahead of him and I’m sure he’ll achieve great things.”