As a 5-year-old, Sam would stand at the front window of his house with a baseball glove tucked under his arm, watching longingly as a neighbor boy his age would play catch with his father.
Although Sam’s father, David, would repeatedly encourage his son to give baseball a try, Sam -- whose right hand was severely impaired from a stroke that happened before he was born -- seemed to think it was impossible.
All that changed when Sam saw a video of Major League Baseball player Jim Abbott. Abbott was born without a right hand and both pitched and caught with his left arm.
The second the clip of this incredible athlete finished, Sam raced to his room to grab his glove. He was ready to play.
“It was like he had an epiphany,” said David.
An integrated approach to treatment
When Sam was 6 months old, his parents noticed that he never used the right side of his body to reach for toys, roll over or crawl.
Sam was soon diagnosed at Children’s Hospital Colorado’s Neuroscience Institute as having suffered a perinatal arterial ischemic stroke.
The stroke – the result of an in-utero blood clot - had damaged the left side of his brain and left him with right-sided hemiplegia, making the right side of his body weak, stiff and difficult to control.
Because strokes affect multiple parts of the body, multi-disciplinary care is key to pediatric stroke patients’ recovery – and it’s also a hallmark of Children’s Colorado’s treatment approach.
Sam went through years of this type of integrated treatment at the hospital, including intensive physical, occupational and speech therapy and Botox injections, which released his contracted muscles and dramatically improved his ability to use the right side of his body.
Despite the success of his treatments, he and his family still struggled to find other young pediatric stroke patients who were facing the same challenges as Sam.
Finding stroke support
Four years ago, Children’s Colorado’s Pediatric Stroke Support Group, which is funded by the Center for Cancer and Blood Disorders, helped to fill that void.
The support group was formed with the goal of helping young stroke patients, like Sam, and their families find camaraderie, discover resources and inspire others by sharing their experiences.
For Sam, the stroke group has done all of that and more.
“I got into climbing because my stroke support group went,” said Sam, who had previously never considered trying this grueling sport. “It opened up the possibility.”
Ever since that fateful Jim Abbott video – and with the help of his pediatric stroke peers – nothing stands in the way of Sam, now a 16-year-old junior at Denver’s East High School, from pursuing his dreams and passions.
Today, he is an avid skier and photographer, a member of his school’s speech and debate team and hiking club, and rock climbs almost every Friday.
On a snowy fall night, pediatric neurologist Dr. Timothy Bernard, who leads the Pediatric Stroke Program at Children’s Colorado, introduces Sam at the support group’s monthly meeting.
As Sam speaks to other stroke families and his young peers, he shows slide after slide of his adventurous life. Skiing in Montana. Climbing Mt. Bierstadt, one of Colorado’s famous fourteeners. His photography from Vail and Copper Mountain. Sleep-away summer camp in Wisconsin.
At the end of his presentation, the mother of another young stroke patient tells Sam just how thankful she is for him sharing his story. “Your victories and successes are proof to our children that they can do the same things,” she says, teary-eyed and grateful.
With the help of Children’s Colorado, an endlessly encouraging family and a mountain of tenacity, Sam has come a long way from the little boy who once stood watching at the window.
Today, he is the role model that he so desperately needed when he was younger.
“For me, courage is knowing that I have this disability, but pushing my boundaries and doing things that are not in my comfort zone,” said Sam. “I don’t let my stroke be the one thing that defines me. And I take every opportunity that comes my way.”
Children’s Colorado’s Pediatric Stroke Support Group
Children’s Colorado’s Pediatric Stroke Program is a part of the hospital’s Neuroscience Institute, which is ranked among the top programs of its kind in the country.
The Neuroscience Institute diagnoses and treats a wide variety of disorders of the brain and nervous system, including conditions like neuromuscular disorders, movement disorders, neurometabolic disorders, epilepsy and stroke.
Strokes can affect many functions of the brain from speech and learning to motor coordination and social skills. Given this, stroke teams at Children’s Colorado provide care from a range of specialized experts in an integrated, multidisciplinary setting.
In an effort to take this holistic approach to treating children and their families even further, the hospital’s stroke program formed a Pediatric Stroke Support Group about four years ago for families and patients ranging from birth to young adulthood.
“The support group has been very impactful in treating the whole child,” said Amanda Kenny, a clinical research coordinator for the Stroke Program, who runs the group, now one of the largest programs of its size in the country. “And it’s really helpful for our stroke families with little babies. It gives them hope.”
The group, which typically has about 20 people in attendance, meets once a month and also participates in larger events such as Strike Out Stroke, along with outings like bowling and rock climbing, finding camaraderie, sharing experiences, and providing information about the resources available in the community, such as individualized education programs (IEPs) at school districts.
Generous donors like you make these kinds of life-changing, non-reimbursable programs, like the Pediatric Stroke Support Group, possible.