Six-year-old Bryson Ackermann is on the road to recovery after the sudden onset of a paralyzing condition
Jill Daly
jdaly@post-gazette.com
Steph Chambers
schambers@post-gazette.com
February 11, 2019
After more than three months away, the boy is back home, grabbing a small basketball and swishing it through the 4-foot-tall hoop in the family room. He pulls a visitor into a game of one-on-one, pointing out his pivot skills and insisting on some competitive play, “Show me some D!”
His head can droop when he’s tired, and his left arm can’t handle the ball, but 6-year-old Bryson Ackermann of South Fayette has come a long way since he was struck with the sudden paralysis — known as acute flaccid myelitis — in mid-October. The diagnosis led to a long hospital stay, complicated by pneumonia, and was followed by inpatient physical rehabilitation to get him back on his feet and shooting hoops.
Bryson Ackermann, 6, receives a kiss from his grandfather Al Draper during the Pine-Richland game against North Hills Jan. 11. (Steph Chambers/Post-Gazette)
This fall across the country, a number of families discovered strengths they didn’t know they had to help their children hit with the mysterious illness, known as AFM. Doctors say it still has no fully explained cause or effective treatment.
Families say first there’s the fear. What is it? How bad is it going to get? What are my child’s chances of recovery? It’s hard to accept doctors saying again and again that they don’t know the answers, according to Bryson’s mom and dad, Jill and Jeff Ackermann.
The Ackermanns, with three children, enjoyed a healthy active life and had moved into a new home in May. Bryson showed exceptional basketball skills and was on a youth basketball team. He enjoyed practices with the top-rung Pine-Richland High School boys varsity basketball team, coached by his dad.
Jeff said the family was determined to do everything possible to help Bryson make a comeback.
Family, friends and community joined together alongside the blond-haired boy to support and encourage him, sharing his love of sport and competition. Ever since the beginning of Bryson’s sickness, people have sent letters and gifts and planned fundraisers and sports-related events to lift up the patient and his family.
Weakness
Bryson is timed as he works to sit up in rehab. (Steph Chambers/Post-Gazette)
It’s now been almost four months since Bryson was taken to UPMC Children’s Hospital of Pittsburgh on Monday, Oct. 15. The Friday before, he had played basketball and had a slight cough, his dad said. That night, he was sick to his stomach and afterward had no appetite. On that Monday morning, he started having trouble with his neck and soon was unable to walk.
“We thought he was just dehydrated,” recalled his mom, sitting beside Bryson’s bed Jan. 17 at the Children’s Hospital Rehabilitation Unit, located at the Children’s Home of Pittsburgh, down Penn Avenue from the hospital in Lawrenceville.
He hadn’t felt well all weekend, added his grandmother, Candy Draper of Green Tree, who was at her daughter’s home helping with the children while Jill, 37, a Bethel Park elementary teacher, and Jeff, 46, a teacher at Chartiers Valley High School, were at work. Candy remembered encouraging Bryson:
“‘Let’s get you to sit up,’ I said. He had no control over his neck. I called Jill, told her she needs to call the pediatrician. His temperature was 101. They told Jill to take him to Children’s.”
“I carried him to the car, holding his head, he was screaming his neck hurt,” Jill said. She sat beside him in the back seat.
Bryson is recovering from acute flaccid myelitis (AFM), a polio-like illness he contracted in mid-October. The temporary paralysis in his neck and arms caused him to be unable to sit up, hold his head up, use his arms and swallow. (Steph Chambers/Post-Gazette)
Because his symptoms of weakness started with his neck and then headed downward, Candy said, she thought of polio.
She herself had polio as an 18-month-old in 1951, waking up from a nap with her left leg dragging as she walked. She stayed six months at what was then called D.T. Watson Home for Crippled Children near Sewickley, where Jonas Salk did research for his polio vaccine.
Candy had seen stories about earlier AFM cases on TV, but she didn’t think it was Bryson’s problem. “Why would you? It’s so rare,” she said.
Bryson developed the symptoms during a local spike in cases. On Oct. 12, three patients were reported being treated for AFM at Children’s. By Oct. 18, there were three suspected additional cases, including Bryson, whose case was later confirmed.
In total, the Allegheny County Health Department confirmed five cases in the county and one patient from Washington County. As of Feb. 1, there were 210 confirmed cases across the nation for 2018, according to the Centers for Disease Control and Prevention.
On duty the night Bryson came to Children’s was Ira Bergman, chief of child neurology at UPMC.
“I credit him with a lot,” Jeff said, after his son was home. Although an MRI didn’t detect the telltale spinal cord lesions of AFM, Dr. Bergman kept Bryson overnight. The next day he was able to diagnose Bryson and decided to be aggressive with intravenous immunoglobulin, a treatment designed to boost the body’s immune system.
After that point, no additional areas of weakness showed up in Bryson, his dad said. “I truly think that stopped the progression. He didn’t lose a single thing after that day.”
Fighting back
Sitting at the table in his wheelchair, Bryson practices sounding out letters with his first-grade tutor, Kristen Johnson (left), as his mother feeds him through his feeding tube. (Steph Chambers/Post-Gazette)
Jill had to take a leave from her teaching job to be with Bryson. At first she stayed with him in the hospital all the time, leaving Bryson’s sister Kendall, 4, and brother Colton, 15 months, at home. Then a rotation started, with mom, dad, grandparents and others taking turns keeping an eye on the patient.
After coming to the rehab unit Nov. 8, Bryson had to return to the hospital twice, fighting pneumonia for four or five weeks, needing a breathing tube. Once that was beaten about mid-December, his parents said, he started making progress.
Bryson watches with his mother, Jill, as players come out of the locker room before the Jan. 11 Pine-Richland game against North Hills. (Steph Chambers/Post-Gazette)
Their regular sitter shared the duties of watching the younger siblings at home with aunts and uncles when Bryson’s parents were in Pittsburgh. By mid-January, Candy was helping with Bryson at the rehab unit and caring for the younger children as needed, who visited their brother on weekends.
Along with lots of drawings, Jill said, Kendall surprised her big brother when he was feeling stronger with a big sack of Halloween candy she collected for him.
Bryson had been unhappy about losing weight in the hospital. The old Bryson returned once he saw he was improving, his grandmother said.
“I always told him, ‘You are going to get better,’” his mom said. She took videos to show him his progress: one photo shows him standing. Still in rehab at the time, he said, “I look normal.” His mom said she told him, “You are normal.”
Not one to give serious answers to questions from a Pittsburgh Post-Gazette reporter during a visit to the rehab unit, Bryson worked his humor on the PG photographer, making faces. Why?
“I like to make people laugh,” he responded.
He wasn’t like that in the hospital when he realized how weak he was, his mother recalled.
“When he was well enough to understand, I tickled him, and he tried to wrestle me. He couldn’t, and he started crying.”
Life at rehab
Bryson tackles and tickles physical therapist Erik Trentrock during therapy Jan. 17. Bryson completed physical therapy, occupational therapy and speech therapy sessions. Mr. Trentrock helped Bryson practice stairs, sitting upright and gross motor skill games, such as basketball, their favorite. (Steph Chambers/Post-Gazette)
By Jan. 17, Bryson had been taken off the breathing tube during the day and was getting three hours a day, 15 hours a week, of speech, physical and occupational therapy. He had advanced to wearing a soft neck collar, which helps to hold his head up as he walks.
On that morning, he took 73 steps — without his collar at PT.
“That’s huge,” his mom said. His dad said losing the collar as well as the breathing tube were goals at rehab that would improve his quality of life once he got home.
And their major goal was for Bryson to walk out of rehab.
“At night he’s exhausted,” his mom said. He has had tutoring twice a week, but his transition back to school hasn’t been worked out yet. He likes gym and recess best, of course.
On a table in his room at the rehab unit was a jumbo card signed by his first-grade classmates. His mom said later Bryson really appreciated their get-well wishes: He knew who drew which picture without seeing who signed it. Some friends were able to visit him on weekends.
As he rested between therapy sessions, he was surrounded by gifts of sports memorabilia, a basketball hoop on the wall, and a cutout of Bryson’s favorite player, Steph Curry of the Golden State Warriors of the National Basketball Association.
Occupational therapist Kim Kubistek, left, stands back as Bryson throws a ball. Occupational therapist Claire McCarthy, second from right, and Bryson’s mother, Jill, watch. (Steph Chambers/Post-Gazette)
Bryson watched some World Wrestling Entertainment action after lunch on his bright green tablet computer. Lunch had been speech therapy that focused on swallowing. Bryson was now eating real food, instead of getting his nutrition solely from a feeding tube. He was trying Lucky Charms cereal, pancakes, bacon, mashed potatoes and pasta.
Jill said after Bryson started to recover and was more alert, they gave him the tablet computer.
“He was not able to hold it with his left hand,” she said. “He said, ‘How can I play if I can’t hold it?’” That problem got solved with frequent use, and the rules were lifted on watching pro wrestling, a sport Bryson’s grandfather Al Draper introduced to the children but mom frowned upon as “inappropriate.”
Now the youngsters are hooked on the protagonists and the antagonists and the drama in the ring, and they share the hobby with their grandfather, she said.
With his father, Bryson kept up with sports as they spent evenings at rehab watching online videos of favorite basketball players.
The therapists have done a great job, Jill said. “We can’t praise them enough. … They have to build a relationship [with their young patients] immediately, or you’ll get nothing from them.”
In an afternoon session of occupational therapy Jan. 17, the therapists were Claire McCarthy and Kim Kubistek. A slingshot exercise, using a yellow elastic exercise band and small soft ball, turned out to be a challenge to get going. Bryson then stood up and threw the ball at pins balancing on a stand. Then he took the ball and dunked it with confidence in a nearby mini basketball hoop.
Watching on the sidelines, his mom said they were making plans to continue the intense physical therapy at home.
Bryson then broke his record for standing up from a lying position on the floor: 18 seconds to a stand.
“You can’t knock me over,” he taunted Erik Trentrock, another therapist. It’s a game the Ackermann kids play with their grandfather, the wrestling fan.
Back on the court
Bryson high fives Pine-Richland players while they are introduced during the Jan. 11 game against North Hills. (Steph Chambers/Post-Gazette)
As of Feb. 5, 972 donations to a GoFundMe online account for family expenses had brought in more than $63,000. Sending good wishes on the site are friends, former neighbors, students and families from Pine-Richland School District.
A coach from a rival basketball team wrote on the site: “I have a son that when he was Bryson’s age came to practice and was on the bench with me; just like Bryson.”
Jeff said there had been fundraising basketball clinics held by coach friends since October, gift cards and letters in addition to the GoFundMe and other efforts.
“I attended Brentwood,” he said. “They did a fundraiser for him. It’s been pretty remarkable, how people have gone out of their way, so many people.” People brought his family food and found different ways to help.
Basketball fans celebrated Jan. 11 when Bryson took his first outing from the rehab unit. He attended the Friday night Pine-Richland vs. North Hills basketball game and was able to stand with the team as they were introduced.
“He walked across the court and they gave him a standing ovation,” his father said later.
And he jogged out of rehab on Jan. 24 his final time, fulfilling that earlier goal.
Bryson walks with his mother, Jill, to their front door after his Jan. 24 discharge from the Children’s Hospital Rehabilitation Unit at The Children’s Home of Pittsburgh. “It made me tear up when I saw him see his welcome home sign. He read it slowly with a serious look on his face, then smiled the biggest smile,” she said. “Same thing with his bed. He jumped on it and just laid there beaming. As a mom, those were two of the best feelings in the world: Not only to have him home, but to see the pure joy on his face when he got home. I’ll never forget that.” (Steph Chambers/Post-Gazette)
Bryson’s mom was ready with a welcome home banner. She decorated his room with a Golden State Warriors theme and Steph Curry photos and other items.
Shortly after his homecoming, Bryson was presented with an award for courage from the Pittsburgh Basketball Club on Jan. 27 at the 2019 Pittsburgh High School Classic after Pine-Richland’s game with Canon-McMillan.
In its announcement, the club said: “Bryson has worked every day to recover in rehab at levels to make any adult beam with pride. He improves each and every day and we are honored to award Bryson the Luke Blanock Courage Award. Bryson WILL defeat this condition.”
The award is named for a multisport athlete at Canon-McMillan High School, who inspired others during his treatment for cancer before he died in 2016 at the age of 19.
Looking for answers
Pine-Richland's boys' basketball coach Jeff Ackermann embraces his son before the big game. Doctors and researchers do not know the causes of AFM nor how it is spread. (Steph Chambers/Post-Gazette)
Many families with their own AFM stories go online, but Jill said she was reluctant.
“When this all started, Jeff joined a Facebook group,” she said. “I couldn’t do it.” She was sensitive to the fact that every child’s case is different, and with success stories, she said, “I didn’t want to have my hopes up. I didn’t want to be discouraged either.”
... to see the pure joy on his face when he got home. I’ll never forget that.
Jill Ackermann
She said her husband is in touch with other families in the group. They heard about nerve transfer surgery, sometimes used as a treatment for nerve damage. The Ackermanns now have an April consultation at the Shriners Hospitals for Children-Philadelphia, to see if their son would be a candidate.
Dan Zlotolow, a specialist who does the surgery there, said it’s been used to treat the relatively rare disease called transverse myelitis for 20 years. More recently, he said, it’s been used to treat spinal cord injury.
“It’s a new application of an established technique,” he said, adding that when used to restore function to the elbow, “the numbers are good.” He said it’s not yet known if healing would be similar in children with AFM.
The Philadelphia team did its first surgery in 2014 on an AFM patient, he said, and is now just shy of 20. They want to see patients six to 12 months after the injury, he explained, because once a nerve no longer works in a muscle, the muscle dies after 18 months. So time is crucial, he said: It takes six months for the new nerve to grow into the muscle.
Back at the Ackermann home, there’s still backup oxygen, if needed, and some nighttime monitoring. Bryson can use the soft collar at home and a hard version for long car rides. The high-backed wheelchair helps to support his head while eating. He’s still getting nutritional supplement through the feeding tube.
A few days after Bryson received the courage award from the Pittsburgh Basketball Club, he was asked: What is courage?
The Ackermann family celebrates Bryson’s discharge from rehab. From left, Kendall, 4, receives a kiss from her father, and Bryson tickles Colton, 18 months, while their mother watches. (Steph Chambers/Post-Gazette)
“It means that you worked hard,” he said. His dad explained that is why Steph Curry is admired, as a relatively small-statured player, “He had to work really hard.” Bryson read about it in the children’s book, “The Boy Who Never Gave Up.”
He wants to be that boy, too.
“We want him to be the child who comes back 100 percent,” his grandmother Candy said. “We want to give families hope.”
Jill Daly: jdaly@post-gazette.com