Home Runs For Life: Ben Riewerts
Ben Riewerts was smiling and giggling as he worked recently on exercises to improve his fine motor skills with Genesis occupational therapist Abby Crotinger.
He bent over backward on an inflatable ball to pick up puzzle pieces upside down and curled forward again to put the pieces in the right place. He played in a sling hanging from the ceiling in the gym of Genesis Outpatient Pediatric Therapy (GOPEDS). He works on buttoning a shirt himself.
“You would never know he was so sick. He is making so much progress,’’ said Ben’s mom, Alesha.
“This boy is a rock star,’’ Crotinger said.
To understand where Ben is going, which soon will be to kindergarten, you have to understand where he has been.
Alesha has immediate recall of the date the journey began.
Aug. 30, 2019 was the day the lives of the Riewerts family changed. The journey the Riewerts have been on since that day has required a team of doctors, the latest treatments, nurses, therapists and maybe just as important as any exam, test or treatment, faith, family and friends were vital.
On that day Alesha checked on Ben because he seemed to be sleeping later than usual. Ben focused on his mom with his eyes and seemed to understand what she was saying, but he didn’t respond verbally. She quickly determined he couldn’t use his arms or legs. He couldn’t get up on his own or walk.
“It was terrifying,’’ she said.
Alesha and her husband, John, drove Ben to the hospital in Geneseo themselves. The family farms near Hillsdale, Ill., and they thought it would be faster for her to drive than waiting for an ambulance. At the hospital, Ben suffered a seizure. He was transferred to OSF in Peoria. It took nearly a month before the Riewerts family had a diagnosis of what was going on with Ben.
He was diagnosed with Anti N-Methyl-D-Aspartate Receptor (NMDA) Encephalitis. Ben had lost function because his body was producing antibodies that act against receptors in the brain. He was experiencing the worst symptoms of the encephalitis variant; loss of speech, loss of arm and leg movement and seizure.
“After several trips in and out of OSF, we wanted a second opinion because the condition was so rare. Ben had his whole life ahead of him,’’ Alesha Riewerts said. “I had never heard of it but I’ve learned a lot now.’’
For six weeks Ben and his mom were at the Mayo Clinic. Ben’s father and other family members would visit when they could.
The treatments for anti-NMDA receptor encephalitis are high doses of steroids, the monoclonal antibody Rituximab and other medications to treat specific symptoms, the seizures for example. Rehabilitative therapies in an inpatient setting are often required.
Ben has had all of the recommended treatments and therapies. He has “graduated’’ from physical and speech therapies.
At each step the family has been supported.
It Takes a Village
“We had two other children at the time and recently had our fourth. It truly takes a village. We needed a lot of help from my parents and John’s parents,’’ Alesha Riewerts said. “We were very fortunate to live so close to our parents. They have been so supportive.
“With God’s strength and grace we have made it through. The progress we’re seeing is a testament to His Grace.’’
When Ben was first diagnosed, the family feared the autoimmune disease would change the course of his life and make him unable to fully enjoy his childhood.
“Just to watch your developing child, who had been so full of energy and personality, just laying in a hospital bed not able to do anything… not able to sit up and hold his own head up…was really heartbreaking. The experience did change Ben's life. The experience has helped him unlock his potential. to see how with hard work and support, he can overcome even the toughest battles.
"He is a determined little guy. We live out in the country and he loves to find projects and he really works at the projects.’’
Crotinger said, "I've been able to watch Ben just flourish and grow and I can see the joy on his face when he is successful.”
Home Runs for Life is recognition and celebration of the rehabilitation successes of Genesis patients. The Quad Cities River Bandits will salute Ben’s courage and resolve on July 30 at Modern Woodmen Park. Ben and his support team will be attending.