Hard work has young stroke survivor excelling
A year ago, 14-year-old pediatric stroke survivor Gus Awan was doing everything in his power to avoid using his left hand.
When texting, he would place the cellphone on a flat surface and use his right hand to type.
Utensils were always a right-hand deal.
And washing dishes was one chore he could routinely get out of by arguing that the task required both hands to complete.
But after a hand function summer camp in June at Columbia University’s Center for Cerebral Palsy Research, Gus began using the left side of his body more frequently and with more confidence.
Since the camp, Gus has become more involved in baseball and school activities and has consistently stayed on the honor roll at Freedom Middle School in Spotsylvania, something his parents Omar and Tanja Awan attribute to his increased mobility—a feat that seemed out of reach to Gus just a year ago.
Gus, an eighth-grader, is even talking about a future studying physics in college.
“I think what I’ve seen for him,” Tanja said, “is that all of this is possible. Before, he seemed resigned to never using his left hand.”
The Awans didn’t know for two years that Gus, their second child, had suffered a stroke in the womb.
He walked and talked late and showed a preference for his right hand, but Omar and Tanja thought his development was normal.
It wasn’t until Tanja began poking around online about childhood development and found a picture of a child with hemiplegia—the total paralysis of one side of the body—that she suspected something was wrong. She then followed up her investigation with a trip to a neurologist.
According to the National Stroke Association, fewer than 1 percent of children younger than 15 will suffer a stroke each year, though children under the age of 2 are slightly more susceptible.
A challenge in diagnosing pediatric strokes is that most parents don’t think children are at risk for them. It’s not the first thing most physicians consider, either, when a child has delays like Gus did.
In 2012, Virginia adopted a resolution that Awan created to make June pediatric stroke awareness month.
Awan has hosted local fundraisers to generate support for researching the condition.
She said it’s hard to find people to connect with locally who have experienced the effects of pediatric stroke. But she’s connected with the national Children’s Hemiplegia and Stroke Association (CHASA) and attends the group’s annual retreat each year.
The family found Columbia’s summer research camps through CHASA.
Awan said the lack of resources in the area, as well as the rarity of the condition, make it hard to find support.
“People don’t know it happens,” she said. “Or they just lump it in with cerebral palsy.”
Gus is on the milder end of the spectrum, she said. He can take care of himself, and the stroke didn’t affect him mentally.
“We’re lucky the study at Columbia focused on kids like Gus,” she said. “Most research focuses on more severe cases.”
Locally, Gus attends physical therapy regularly. But he no longer needs to see a speech therapist at his middle school like he did last year.
For children like Gus who have had pediatric strokes, learning to use the affected side of the body is harder than for an older, more traditional stroke patient because limited mobility is all they’ve ever known.
But Gus said it’s important to remember, “that it’s not bad if it [a stroke] happens. People in school are like, ‘Oh, what happened?’ and they think it’s a big deal, but it’s not.”
When Gus and his parents arrived in New York last summer, the researchers at Columbia coached him through a series of diagnostic tests to determine how much he could use his left hand.
One of the tests involved picking up jelly beans with a spoon and placing them in a cup.
With his right hand, the test took under 10 seconds.
But with his left hand, the exercise took minutes.
“It was heartbreaking,” Tanja said. “It’s always hard as a parent, you don’t want them to struggle.”
The researchers at Columbia used constraint-induced therapy to train Gus how to use his left hand. Every day between 9 a.m. and 3 p.m., when he was at the camp, his right hand was restrained, and he could use only his left hand.
Before the three-week camp, the left side of Gus’ brain controlled both hands, which the team at Columbia determined through an MRI and a transcranial magnetic stimulation test.
In those with normal brain function, the left side of the brain controls the right side of the body and vice versa.
In their report of Gus’ brain activity, the Columbia research team said one of the reasons they are doing the study is to understand how the brain works in children with limited mobility disorders.
After the camp, however, both the left and right sides of Gus’ brain controlled the movement of his left hand.
The report stated that this was the best possible outcome, one that doesn’t always happen in the children they study. The increased brain function was a testament to Gus working hard, it read.
“It’s not just movement,” Omar said. “The right side of his brain is connecting more. He grasps intent when reading and no longer has trouble with sarcasm.”
The trip wasn’t all work, though. Gus spent three weeks in New York City with his mother and sisters Rachael, Wilhemina and Phoebe, going to Yankees games and visiting the Statue of Liberty. Omar, who works for the House of Representatives, joined them during weekends to sight-see.
“It was fun,” Gus said. “I really liked the pizza. I’d go back.”
Gus has homework from the camp at Columbia. And if he sticks to it, he is hopeful that he can catch a ball and hold playing cards in his left hand by next summer’s camp.
Each week he has to complete a list of activities with both hands, including putting on and taking off shoes, carrying a tray, playing guitar, opening a jar, cutting paper, making crafts and pressing buttons.
He plays video games to fulfill the button-pressing requirement.
Awan said she always knew he could master the use of his left hand because when he was excited about a game, he would try to use both hands on the controller.
Next year he’ll be starting high school at Riverbend. And in a couple of years, Gus will be driving.
Awan said it’s not his condition that worries her about him behind the wheel—it’s his love for games such as Grand Theft Auto.
“I just want to keep getting better,” Gus said.
Children’s Hemiplegia & Stroke Association (CHASA): chasa.org
Columbia University’s Center for Cerebral Palsy Research: tc.columbia .edu/centers/cit/
National Stroke Association: stroke .org
Lindley Estes: 540/735-1976
THEN & NOW is an occasional update on stories previously featured in The Free Lance–Star.