Marianjoy Scholarship SUCCESS STORIES
From Cradle to College: A Lifelong Partnership with Marianjoy
Identical twins Juleah and Gianna Puccinelli share a lot more than DNA. As a result of a premature birth at 26 weeks, the girls were born with cerebral palsy. Their relationship with Marianjoy began when they were only two years old. In an interview with Marianjoy when the twins were four years old, their mother said her ultimate dream for the girls would be to go to college someday. This year, with the assistance of a Marianjoy Scholarship, that dream came true.
Because they were born so early, the twins spent the first three months of their lives in the hospital. At one year old, they were diagnosed with Cerebral Palsy. Doctors recommended the girls started wearing leg orthotics 24 hours a day, as well as a full-body splint at night, to keep their muscles stretched. They also prescribed physical therapy three times a week to help with situational balance and muscle tightness. The Puccinellis created a therapeutic environment in their home, too: "Everything we did was therapy," says Juleah. "Our family integrated stretching and playing into our everyday lives. This created a comfortable atmosphere for us, our extended family, and kids in the neighborhood."
That comfortable atmosphere expanded for the girls when they came to Marianjoy at two years old. "Because we lived in the general area and had heard good things about it, our family chose Marianjoy for our therapy treatment," Gianna explains. Even though they were young, they remember the transition: "In January of 1999, I discovered what Marianjoy was going to mean to my family," says Juleah. "There were volunteers greeting us with smiling faces, families in the waiting room, and employees ready to walk this road with us." The twins note that they actually enjoyed their time in therapy, viewing it more as fun than a chore. "It became normal for us," says Gianna. "I saw it as an hour or two of playing instead of difficult exercising."
Gianna and Juleah were involved in a thorough therapy program at Marianjoy, including physical, occupational, and aquatic therapy. They even got an evaluation from the Marianjoy Driver Rehabilitation program, which they passed. In addition to therapy, they have received Botox injections, tendon lengthening and transfers, a couple of surgeries, and serial casting. Dr. Keen has been part of their journey the whole way. "While she is a wonderful doctor, she also brings an extra sense of care," says Juleah, recalling how Dr. Keen took a personal interest in the girls' welfare. They say the same is true of the several therapists they've worked with over the years: "I never felt like just another patient at Marianjoy," says Gianna. "Whether in occupational or physical therapy, the employees don't stop caring about your improvement when the appointment is over." Even though they no longer need triweekly therapy sessions, they still come back for check-ups and advice.
The twins' lifelong perseverance has paid off. "The biggest thing I've learned from living life with Cerebral Palsy is the value of hard work," says Gianna. "In order to improve physically, I had to remain dedicated to daily therapy routines, working past frustrations, aches, and pains throughout the day. Dedication to therapy carried over to the rest of my life, bringing me where I am today." With this hard work, they've gained profound perspective, too, remarkable for anyone, but especially wise beyond their years: "Everyone struggles with one big thing that they wish they could change about themselves," Juleah reflects. "The realization that I struggle along with everyone else gives me a common ground with every other person in the world; I've learned to be honest about my "one thing" so that others can be honest about theirs."
Now excelling at Olivet Nazarene University, the twins have come a long way since their toddler days. Not only did they achieve their family's dream of going to college, but they started a whole year early, at age 17, both of them also winning Marianjoy Scholarships. Although they are close with their family, the girls chose a university where they would live away from home, as a step in independence. "College has been everything I hoped it would be and more!" says Juleah. "When I was a little kid in physical therapy learning how to walk, the thought of being on my own and walking around a college campus every day was unimaginable. Now, it's a reality." Both girls say that their journey with Marianjoy inspired their career choices to become disability advocatesâ€”Gianna in nursing, and Juleah in communications. "Witnessing other people's journeys at Marianjoy has cultivated an awareness and compassion for disabilities. We've learned that your disability is only a small part of who you are; it does not define you," Gianna explains. "Marianjoy has taught me what it means to be surrounded by people who make it their job to care and make it easy to work hard," adds Juleah. "Every time I'm there, I feel they understand my situation and are compassionate to all of the little struggles in my life. We both want to pass that care and compassion on to others, too."
Click here to watch Juleah and Gianna speak about the journey to rehabilitation with Marianjoy in Wheaton Franciscan Healthcare's 2013 Annual Report.
Amanda Fowler, four-year scholarship recipient, now works at Marianjoy as a marketing specialist and blogger for AbilityLinks.org