"I am Not a Genetic Disorder" - Taylor's Story
Little Taylor Herman was only 9 months old when her foster family became her forever family. She was a beautiful, happy baby whose body had secrets yet to be revealed.
Her mother knew that Taylor had been born with Situs Inversus, a reversal of internal organs from one side of the body to the other, but the rare condition does not normally result in medical complications. What she did not know until after the adoption was that baby Taylor also had Charcot-Marie-Tooth disease (CMT), an incurable neurological disorder that causes the continued loss of muscle tissue and sensation throughout the body.
While not impacting Taylor greatly when she was an infant, as she learned to crawl and walk, the deficits caused by the disease became apparent. She was fitted with leg braces to help her walk, and suffered constant pain due to muscle spasms. She underwent multiple orthopedic surgeries to correct abnormalities in her legs and feet caused by the muscle atrophy. While her sister Makayla was running and skipping, Taylor was falling down and crying in pain.
When she was 5-years-old Taylor began therapy at The Children’s Institute. In the months that she has been coming to The Children’s Institute, she has learned techniques to manage her pain and cope with her genetic disorders. Taylor especially loves aquatic therapy, which to her, just seems like playing in the pool! Taylor comes for outpatient therapy multiple days a week, and is learning how to manage her conditions and enjoy life as a happy 6-year-old.
"I am Not Cerebral Palsy" - Dominic's Story
Born eight weeks early, Dominic Ruperto, even as a newborn, seemed to be telling the world he was ready to go, no matter what obstacles stood in his way.
After worrying about what seemed like a lack of normal development in her infant son, Michele Ruperto sought medical advice and 1-year-old Dominic was diagnosed with Little’s Disease, a form of Cerebral Palsy affecting the lower extremities.
From the time he began to walk, Dominic received physical and occupational therapy. Although only a temporary solution, orthopedic surgery to release his leg muscles was done when he was 5-years-old, and will likely have to be done again as he grows. Following the surgery at Shriner's in Erie, Dominic came back home to Pittsburgh to receive inpatient rehabilitation at The Children's Institute. Dominic made huge strides during his time as a patient at The Children’s Institute, and got involved with adapted sports through our Sports Clinic. Even so, Dominic uses a wheelchair to get around most of the time.
But that’s not enough to hold down a remarkable boy like Dominic. He is musical – playing both the violin and trombone – and athletic, playing on multiple adaptive sports teams including sled hockey, basketball and rugby. He’s popular too, making friends with schoolmates, teammates, firefighters, and veterans. At 11-years-old, Dominic’s vivacity is contagious; it spreads in smiles on the faces of everyone he meets.
"I am Not a Chronic Pain Condition" - Lauren's Story
Today, Lauren Resnick is a strong, healthy 16-year-old with incredible athletic talent, but only seven short years ago, she couldn’t even walk.
After suffering a broken ankle in 2009, Lauren, then only nine years old, began to experience pain that grew so intense she couldn’t stand or walk. She was diagnosed with reflex neurovascular dystrophy (RND) also known as complex regional pain syndrome. This rare nervous system disorder causes chronic pain that often hinders sufferers from participating fully in life.
Lauren and her parents traveled 200 miles from their home in Harrisburg to The Children’s Institute in Pittsburgh to seek treatment. The Pain Rehabilitation program, led by a physician specialist in Physical Medicine & Rehabilitation, combines physiological and psychological therapies and comprehensive family education in a holistic approach that addresses the mind-body connection. Over the course of her six-week stay, Lauren’s doctors and therapists taught her exercises, relaxation and stress management techniques to deal with her pain.
It was a lot of work for a little girl, but every day Lauren participated in rigorous physical and occupational therapies, one of which included a hula hoop. After mastering one hoop, and beginning to gain control over her pain, Lauren added another hoop for fun. As she progressed and her pain diminished she tried out another one and then a few more, until she developed the amazing ability to whirl 12 hoops at once!
After successfully completing her treatment at The Children’s Institute, and continuing her therapies at home, Lauren decided to share her special talent at local sporting events, not only entertaining the crowd, but also raising awareness of pediatric pain syndromes. Her performances give families hope that with perseverance a child with this rare condition can overcome pain and live life to the fullest.
"I am Not a Brain Injury" - Ryan's Story
Ryan Morrow enjoyed a normal boyhood, for the most part, until unexplained seizures began to steal his freedom.
A surgery to determine the cause of the seizures revealed a brain tumor. Removing the tumor was undeniable, but doing so resulted in other problems. After the operation Ryan couldn’t sit up or walk, and had no use of the right side of his body. To the 11-year-old and his family, the future seemed hard if not bleak.
Ryan came to The Children’s Institute right after his surgery to receive the comprehensive rehabilitation that was needed to get him back on track. His physical and occupational therapy focused on coordination, arm and leg strength, core strength and balance. At the center of his personalized rehab plan was Ryan’s own goal: to play baseball again. His therapists included activities that paralleled baseball movements to keep him engaged while reaching his treatment goals.
After inpatient and follow-up outpatient therapy, Ryan was walking, running, and reclaiming the youth he almost lost. And in the spring of 2016, just two years later, Ryan was playing baseball again just as he said he would.
Alex Brown: Spinal Cord Injury
ALEX BROWN. A one-in-a-million child rises to the challenge of recovery.
At three years old, Alex Brown experienced a one-in-a-million medical event: a cervical epidural hematoma further complicated by a spinal stroke. Alex spent 11 weeks in the ICU at Children’s Hospital of Pittsburgh of UPMC, he had numerous emergency surgeries, and there were times when his parents didn’t know if he’d survive.
But survive, he did.
After finally stabilizing, he was transferred to The Inpatient Specialty Hospital at The Children’s Institute. On arrival, Alex required a ventilator to breathe and a feeding tube for nourishment, he was unable to move his legs, and his upper body was extraordinarily weak.
Our multidisciplinary team of specialists sprung into action. Led by a pediatric intensivist and a pediatric rehabilitation medicine specialist, the team began to set goals and devise a plan.
Alex’s parents were involved from the beginning, “They involved us right away and let us help set goals. We wanted an aggressive program to get help Alex get his life back on track and that is exactly what they did.”
In additional to medical treatment, Alex’s program included several hours of physical, occupational, speech/language and recreational therapies. The initial goals were to build his endurance and increase his core strength to help with breathing and balance. These would pave the way for standing, walking and improved motor skills.
Alex has a terrific imagination and the therapy team went wherever it took them, “Some days we were astronauts, some days we were chased by monsters.”
Therapeutic recreation specialist Melissa Fryman, CTRS, took him outside to help him deal with grass and sidewalks, and also have fun. In fact, Alex renamed recreation therapy his “fun class”.
When discharged, The Children’s Institute therapy team visited Alex’s home to help the Browns plan for any necessary accommodations. They arranged for in-home nursing care, and created a therapy schedule at our satellite facility in Wexford.
Today Alex is a fun-loving 9-year old. He attends Adapted Sports Clinics at The Children’s Institute monthly, and his parents are still fans of The Children’s Institute. “They had a lot of compassion, but they also pushed him to work hard...They saw what we see in Alex—a strong, brave kid who beats the odds.”
Davanna Feyrer: Brain Injury
Davana Feyrer. Recovering from a traumatic brain injury, step by delicate step.
Davanna was just another 10-year old girl on her way to dance class. Then an 18-wheeler slammed into her family’s car. Weeks later, this once active, smart, funny girl was immobile, unresponsive and being admitted to The Inpatient Specialty Hospital at The Children’s Institute with a traumatic brain injury.
Working with her family, our team of doctors and therapists created a treatment plan and began the work of returning Davanna to her life.
Through hard work and determination, she progressed steadily. Her speech began to return; she started walking with the help of a walker, and the radiant personality that her family had always known began once again to shine through.
Throughout the seven months she spent as an inpatient, Davanna refused to give up, always working, always trying. Her rehabilitation team at The Children’s Institute was right by her side.
“The people are expert and compassionate, every one of them,” said Davanna’s father, Dave, of the staff at The Children’s Institute. Her mother, Minetta, adds, “They would lift us up when we were down, and they would give us hope. We are thrilled that Davanna ended up here.”
Davanna’s family was even more thrilled when their daughter was able to return home. She continues to receive weekly outpatient therapy, and over four years after her accident, enjoys her family, school, friends - and her beloved ballet.
While at The Children’s Institute, Davanna’s attitude, determination and spirit won the hearts of many. “She has made some real friendships, bonds and connections at The Children’s Institute that I can’t imagine she would’ve gotten anywhere else,” says Davanna’s mother. “That’s what kept her inspired and moving on. She amazes me.”
Kenna: Pain Rehabilitation
Helping a teenage girl learn to manage her pain and return to her life.
When Kenna needed a way to manage her pain, her family turned to us.
Fifteen-year-old Kenna was in excruciating pain. Everything hurt; she struggled with school and with living a “normal” teenage life.
After numerous tests and exams, her doctors in Texas diagnosed her condition as reflex neurovascular dystrophy (RND), but were unsure how to treat it, so they referred her to a nationally renowned program — the Pain Rehabilitation Program at The Children’s Institute.
RND is marked by disproportionately severe, chronic pain following an injury or illness. The treatment for this condition involves intensive physical and occupational therapies that focus on the areas affected by pain. These therapies are designed to desensitize the nerves and break the cycle of pain, while promoting strength, endurance, agility, and function. Psychological counseling and biofeedback are also part of the treatment, and help patients learn to control and manage their stress and, so, reduce their pain.
The Pain Rehabilitation Program at The Children’s Institute provides both inpatient and outpatient programs, and sometimes patients experience a combination of both. In all cases, each child’s treatment is highly individualized, based on their life and needs.
For Kenna, coming from Texas, an inpatient program just made sense. Over her eight-week stay at The Children’s Institute, the bright teenager improved remarkably. Every day, Kenna learned how to better control her pain and stress.
“We had a wonderful experience there,” says Kenna’s mom, Vicki Faust. She smiles and adds, “The therapists do ‘tough love’ in a nurturing and effective way.”
Noah Sheriff: Spinal Cord Injury
Noah Sheriff: Rising to the challenge of recovery.
Life can change in the blink of an eye. Nobody knows that better than 20-year-old Noah Sheriff, a patient at The Children’s Institute.
Noah was 15 when his family moved from Liberia to the United States. Not one to shirk a challenge, he adapted well to his new home and culture—by his senior year at Baldwin High, he was a well-liked, excellent student and star athlete.
Then in January of 2011, Noah was faced with the biggest challenge of his life. His neck was injured during a wrestling match, requiring surgery to repair vertebrae damage. There were complications and Noah emerged from surgery completely paralyzed from the neck down.
“I was so scared,” he recalls. “I couldn’t do anything but breathe and think.”
Noah was transferred to The Hospital at The Children’s Institute where he immediately began an intensive regimen of therapies. For five demanding hours a day, he received physical and occupational therapy designed to help him relearn to use his muscles. State-of-the-art equipment was put to use, such as special electronic stimulation bike that exercised his legs, preventing muscle atrophy and promoting blood circulation. Noah didn’t stop there; he constantly requested “homework” he could do during the evenings.
With the support of his therapy team, as well as his family, friends and coaches, Noah’s hard work paid off. He progressed consistently as he worked toward his biggest goal – the ability to walk at his June graduation.
Noah reached his goal, and on graduation day, walked across the field to accept his diploma, he received a standing ovation
Today, Noah is a student at Penn State Greater Allegheny, where he is studying rehabilitation engineering. He also plans to write a book about his experience one day, and never forgets to share credit for his amazing recovery, saying, “The Children’s Institute is the greatest I can imagine.”
Vanden Bicker: Feeding Disorders
Functional Feeding Program: The expertise and teamwork necessary to sustain Vanden and his family.
Vanden Bickar was born with refractory epilepsy and developed complications that made it impossible for him to take a single sip or bite. By the time he reached 14 months, his only source of nourishment was a feeding tube.
Fortunately, he was referred to The Children’s Institute— and the region’s most comprehensive Functional Feeding Program.
Children enter this program on either an inpatient or outpatient basis. After a careful evaluation, Vanden’s multidisciplinary team of physicians, nurses, speech/language pathologists, physical and occupational therapists and nutritionists determined that the toddler needed the intensity of inpatient treatment. Together, this team and the Bicker family set goals, developed a treatment plan, and began working with Vanden several times each day.
The first step was to use therapy techniques to work on the child’s lip closure and on the skills involved in moving food around in his mouth and chewing it. The team also worked on Vanden’s motor skills, some of them related to feeding issues and some because prior hospitalizations had led to developmental delays. Vanden’s family played a big role in their son’s therapies; learning the techniques and providing the comfort and support a toddler needs.
Gradually, Vanden began to make progress. First, he was able to take liquids by mouth and then solids. By his discharge eight weeks later, he was happily eating and drinking a good portion of his daily calories.
Today Vanden continues his progress as an outpatient at The Children’s Institute’s Bridgeville satellite. And his parents are both relieved and grateful.
As his mom, Alissa, says, “The program has been extraordinary, with great communication and family involvement. Vanden is exceeding expectations, and we can’t thank The Children’s Institute enough.”
Zoey Keith: Ventilator Management
How the region’s only rehabilitation-oriented ventilator management program for children and adolescents helped Zoey Keith go home.
Zoey Keith’s young life has not been easy. Born prematurely in Erie, she was hospitalized for three months. Her birth mother was unable to take care of her, so she went home with Rhonda and Troy Keith as a medical foster child.
At 17 months, Zoey was progressing and delighting her foster family. Then, because of sleep problems, she had an adenoidectomy. Her delicate lungs couldn’t tolerate the procedure and Zoey’s only hope for survival was life support.
Zoey remained on the heart-lung machine for weeks and it was unlikely that she would survive once off of it. Recognizing her dire situation, a judge granted the Keith family an emergency adoption. And then a miracle occurred; when the life support was disconnected, Zoey took a faltering breath on her own. For six more months, she remained in the hospital, sedated and requiring a ventilator to breathe.
Finally she was stabilized enough to move to The Hospital at The Children’s Institute, the region’s only rehabilitation-oriented ventilator management program for children and adolescents.
When Zoey arrived, she was small and silent, totally de-conditioned after her long hospitalizations. Under the guidance of a physiatrist and our Chief Medical Officer, her rehabilitation team of respiratory therapists, physical and occupational therapists, and speech and language pathologists went to work with an intensive program of treatments and therapies, multiple times a day, six days a week.
Their collective work paid off. Zoey gained strength and endurance, she re-learned how to walk and play with toys. Over time, the high settings on her oxygen and ventilator were weaned down.
Her parents progressed as well, becoming experts on trach care and Zoey’s therapies. “ We had such good teaching and training. I had been in tears thinking about learning trach care; I was so scared. But then our respiratory therapist was so calm and knowledgeable as she helped us learn suctioning, trach changes and all the rest.”
Four months after she arrived at The Children’s Institute, Zoey was ready to go home. Family and friends welcomed the little girl they hadn’t seen in more than a year.
Rhonda said, “For Zoey and for us, The Children’s Institute was a life changing place.“ Troy added, “This little girl received so much care and thought and attention. We’re very thankful. We feel blessed.”