Starlit has a smile and shining eyes that make others feel good. You may also notice the child from northwest Illinois moves a little differently through the world. Starlit has cerebral palsy, the most common physical disability in children.
"Although she has many challenges, she has an amazing heart, smile, and (a) drive to live life to its fullest,” Stephanie, Starlit's mom, said.
The 7-year-old's condition affects her arms and legs, and her balance, so she uses a walker or wheelchair to move around at home and school. But a recent growth spurt made moving and standing more difficult.
Stephanie knew a return visit to Shriners Children’s, the hospital where Starlit has found new hope and new mobility over the last three years, could help her daughter. Our unique care model brings together teams of specialists focused on specific conditions such as cerebral palsy, and some locations, like Shriners Children’s Chicago, where Starlit was seen, offer intensive programs of inpatient, outpatient and day rehabilitation services. In these programs, patients receive multiple hours one-to-one therapy and services each day to maximize the benefits of their care.
Stephanie made the decision to drive nearly two hours and spend several weeks in Chicago because the family wanted more extensive treatment for Starlit's cerebral palsy than was available where they live. Recalling Starlit's first rehabilitation experience at Shriners Children's, Stephanie knew the third trip would be just as helpful.
"This was just what she needed!" Stephanie said. "The chance to be around people with similar abilities, and therapist and mentors that wanted nothing more than to see her grow and achieve.”
The entire medical team works together with the patient and their parent to create goals for rehabilitation. Sue Mukherjee, M.D., is Starlit's physical medicine & rehabilitation physician in Chicago, and Haluk Altiok, M.D., provided Starlit's pediatric orthopedic care.
"She has made great progress in the time that we’ve known her," said Dr. Mukherjee. "We are monitoring her hips to ensure they grow well, but (are) also using bracing, therapy and injections."
Starlit’s team decided this time, her third stay for intensive rehabilitation, to focus on strength, standing and balance. She also needed work on turning and not bumping into things with her walker.
“Starlit loves being at Shriners Hospitals. She loves seeing so many kids just like her that are working hard. She loves it," Stephanie said.
The care team worked with Stephanie to time the visit to maximize the benefits of botulinum toxin injections. Given at the beginning of Starlit's stay, this treatment can reduce spasticity (or over tightening) in certain muscles, which is a common issue for cerebral palsy patients.
"Mom has been able to arrange time after her injections to come and work intensively on leg strengthening and walking, to take advantage of the effect of the injections to help her progress. Her trunk, legs and walking ability have all progressed with each intensive therapy session she has had," Dr. Mukherjee said.
Thanks to your services, not only has Starlit made progress beyond that which was thought even possible, but you have helped her to remain happy and hopeful by providing special services and an excellent, encouraging staff.
Like most 7-year-olds Starlit loves games. Her therapists disguised much of her hard work during rehabilitation as play. Physical therapists created games like "Find the Frogs" and her favorite game called "Don’t Touch the Cones!" where Starlit had to maneuver around cones that were put in her path as she walked. She and her therapists also played modified basketball during physical therapy, to help become stronger standing up, while having fun getting there.
Her care involved more than just therapy appointments. The hospital’s wheelchair seating team made minor repairs to her wheelchair to allow her to use it at school. POPS Midwest provided new ankle foot orthoses (AFOs) and a new hand splint.
Starlit and her mom stayed on-site in patient family apartments, which are available at some Shriners Children's locations. This convenience in Chicago allowed Starlit to rest between sessions and take advantage of the hospital's additional services like child life and recreational therapy activities.
All the specialists, treatments and services at Shriners Children’s were important to increasing Starlit's independence. But one of her favorite parts was getting to ride her bike in the hospital.
She pedaled around the hospital’s indoor Patient Activity Mall with a big grin. Shriners Children's awarded the bike to her in 2020 through a collaboration with a nonprofit at Shriners Children's Chicago called Special Bikes for Special Kids.
“This bike is so amazing for her. She can gain so much strength on her right side and independence playing with her sisters,” said Stephanie. Starlit has been able to bike ride with her mom and sisters Brielle and Waverly, without having to sit on the side and play with bubbles like she used to.
“This is one of the only forms of exercise that Starlit can access and use on a daily bases especially in the warmer months here in Illinois,” said Kathleen Sweeney, PT, DPT, PCS, one of her physical therapists, who wrote a letter in support of her bike application.
Starlit finished her rehabilitation stay with more movement and independence. The family plans to continue her progress with regular services at school and therapy near her home. "“Starlit has always had a drive to succeed and overcome," Stephanie said.
Snow delicious. When a snowstorm hit Chicago, Amanda, Starlit's recreational therapist got creative and got Starlit to work on her balance and using her right hand. They made snow ice cream together with fresh snow gathered from the hospital backyard. Starlit said the sweet treat was "delicious."
This special bike is one of Starlit's favorite things! She got it on her seventh birthday through a program managed by Shriners Children's Chicago recreational therapy.
