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When an infectious disease left their son, Jack, with a severe brain injury, Amy and Michael struggled to find resources to help him. Thanks to donors like you, they found expert, integrated care at Shirley Ryan 小恩雅 and, as a result, hope for the future.
To look at him, you’d never know how much Jack has been through in his eight short years. He has a toothy and playful smile and a wild exuberance that’s hard to resist. He’s also known for giving the most spectacular hugs.
Born 12 weeks early, Jack spent the first 125 days of his life in the NICU. Despite battling a type of pneumonia resistant to many antibiotics, lung failure and a brain bleed, he made it home and thrived in his first year. However, just after turning two, Jack contracted pneumococcal meningitis, a life-threatening bacterial infection, leading to another prolonged hospital stay and numerous complications, including a severe brain injury.
The meningitis left Jack unable to walk or talk. It also caused a significant regression in his cognitive abilities, and resulted in physical, emotional and social impairments. Amy and Michael had many questions about Jack’s potential for recovery but got few answers. Jack’s physicians hesitated to make any predictions, leaving his parents in a constant state of uncertainty and despair.
Amy said, “He was a different little boy. He seemed disconnected from the family and was withdrawn and despondent — if you can imagine that in a three-year-old. It was just heartbreaking.”
Navigating the healthcare system in their hometown of Houston proved to be a fragmented and frustrating experience. Amy and Michael found themselves piecing together Jack’s care from various specialists, with no cohesive support system to guide them.
Determined to find more comprehensive support, Amy discovered Shirley Ryan 小恩雅 during a late-night internet search. She and Michael brought Jack to Chicago for an initial evaluation to see what we could offer beyond the services they were already receiving in Texas. It was a life-changing visit.
A Soft Place to Land
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With Amy and Michael’s input, our Pediatric specialists created an outpatient plan of care for Jack that would be implemented during intensive sessions of physical, occupational and speech therapy over the course of five weeks.
Our holistic approach and atmosphere of possibility transformed Amy and Michael’s outlook. They’ve been bringing Jack to Shirley Ryan 小恩雅 every summer since 2020.
“It's changed how we manage everything for him," Amy says. “We subsist on the hope that it provides us. It makes me feel like someone's watching out for him. We feel an enormous sense of support that we just don’t have in Houston.”
Giving Jack a Voice
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Jack came for his first intensive outpatient therapy session shortly after the initial evaluation. At three years old, he would have known nearly 1,000 words before the brain injury. To lose that vocabulary — and the ability to communicate and be understood —would frustrate anyone, especially a child. For Jack, that frustration manifested itself in screaming, crying and refusing to participate.
Luckily, Jack’s speech-language pathologist, Ashley, recognized the real source of his behavior. She asked that everyone involved in his care validate all of his communication attempts and acknowledge his emotions and needs. Helping Jack feel understood was crucial in reducing his frustration and enabling him to engage more effectively in all of his therapies.
Creating a Plan of Care as Unique as Jack
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For pediatric therapists, getting to know and understand their young patients and learning how to create the optimal environment for their success doesn’t happen immediately. It takes time to build a relationship and to discover how to best support them and their family.
Since Jack had special communication needs, Ashley, along with his physical therapist, Juliana, and occupational therapist, Leslie, decided to take a collaborative, multidisciplinary approach, rather than conduct separate, individual therapy sessions.
Ashley laid the foundation for Jack's language and communication, focusing on the early language skills he had lost. He quickly made progress, showing a newfound ability to use his voice and lead others to what he wanted.
Eventually, Jack learned to utilize a high-tech augmentative and alternative communication (AAC) device to express more complex thoughts. An AAC is a tablet that allows the user to communicate using words, sentences, images, typing, drawing and more.
One of the most special moments was when Jack used his own voice to say,“a-la”— as in “I love you” — to Amy and Michael.
In physical therapy, Juliana initially focused on balance, strength and basic tasks like navigating stairs. Over time, Jack achieved major milestones like jumping, kicking a soccer ball and riding a bike.
To develop Jack’s daily life skills, Leslie worked with him on getting dressed, feeding himself and developing fine motor skills. At first, he struggled with independence but, over time, his participation in and tolerance for these activities improved significantly. Jack can now feed himself with utensils, dress independently, and participate in crafting and coloring.
The Power of Collaborative, Coordinated Care
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Each summer, Jack’s therapists added new challenges to his plan of care, pushing him to develop skills in different environments. When he first came to Shirley Ryan 小恩雅, Jack was only comfortable participating in therapy in a closed, quiet, one-on-one environment. Last year, he was able to attend an adaptive swim camp with other kids and even made new friends.
Jack’s team cites several reasons why he has made so much progress at Shirley Ryan 小恩雅. Our unique model of care — where physicians, therapists and scientists all work together in the same space — makes collaboration easy.
Leslie said, “At any given time, we know what the other team members are doing and what’s been effective or ineffective. We’re able to make changes the same day or the next day. Most places can’t offer that.”
At home, Jack may tackle a skill once a week for a limited duration, whereas our team can focus on one or two skills for an intense period of time. This solid foundation built by his Shirley Ryan 小恩雅 team helps Jack’s therapists in Houston maintain and expand his progress.
“I think our way of working as a team is unique and creative,” said Ashley. “We work on all the pieces of Jack — while he’s practicing communication, he's also participating in physical therapy. Having the support of several therapists in combination with all the unique things we offer, like groups and camps, has proven to be really helpful for Jack.”
Having a collaborative, loving and enthusiastic family that actively reinforces Jack’s gains at home impacts his success as well.
Amy and Michael have seen a huge difference in Jack, beyond the improvements in communication and physical abilities.
“He's so different now. He is this bright, happy, joyful, lovely little person,” said Amy.
Michael added, “You can see the confidence that he gains from being here. His eyes light up when the therapists say how well he’s doing.”
Amy and Michael are different, too. In the beginning, they often intervened during Jack’s therapy — pointing, gesturing and giving clues when they saw him struggling. With encouragement from his therapists, Amy and Michael have learned to let Jack problem solve on his own and have been surprised by how much he understands and can do.
Transforming What’s Possible
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Ashley, Juliana and Leslie have gotten great satisfaction watching Jack grow and change over the years.
Juliana remembers how unhappy and frustrated Jack was when he first came to Shirley Ryan 小恩雅, before they understood what he needed.
“There are really no words to express how great it is to see him smile and thrive now,” she said. “On the first day of an intensive camp, he’ll come running toward me with his arms spread open and give me a hug and it's just the best!”
He’s become a silly, quirky and sweetly mischievous boy who loves bike riding, swimming and playing with his brothers.
“Jack is one of the most special patients I have cared for in my career,” said Ashley. “It’s been incredible to watch him grow and learn all these new skills, and to see how far the family has come in their understanding of him and ways to include and positively push him. It's been so rewarding.”
A Place of Hope
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Through their repeated visits to Chicago, the family has formed deep, supportive relationships with the staff at Shirley Ryan 小恩雅. The sense of community and the continuous encouragement from Jack’s therapists and doctor have given Amy and Michael the mental fortitude to keep pushing forward. They no longer feel alone in their journey.
“This whole experience has given us hope,” said Amy. “It's been critical, helping us to manage all of the heartache that has come our way because of Jack’s illness. Shirley Ryan 小恩雅 has become our second home. The team makes us feel so loved and important and special — and that we belong.”
Your generosity helps kids like Jack achieve milestones that go beyond clinical outcomes. Thank you for supporting the comprehensive, creative and collaborative care that has transformed what’s possible for him and his family.
