Danielle Tiberi was only 13 when she was diagnosed with myasthenia gravis, a chronic disease that causes muscles to tire and weaken easily. It’s rare in adults — and almost never seen in children.
By the time she was 15 she was having difficulty walking and performing such tasks as feeding herself
“School was difficult because I was so weak,” she recalled. “I thought there was no way I would be able to finish high school.”
A nurse suggested First State School, located in Christiana Care Health System’s Wilmington Hospital. For 30 years, the school has provided education in a medically supportive setting for children with such serious illnesses as HIV, type 1 diabetes, cystic fibrosis, cancer, sickle cell anemia and osteogenesis imperfecta, a genetic disorder that causes brittle bones.
“Every child at First State School has health issues. That is why they are here,” Tiberi said at an anniversary celebration on Aug. 9 in the hospital atrium for students, alumni and staff. “The student next to you could be getting a blood transfusion, an insulin injection or chemotherapy.”
Today, Tiberi is 37 and in good health, thanks to surgeries and advancements in treatment. She has a degree in behavioral science and a job at Nemours/Alfred I. duPont Hospital for Children. She is the mother of a young daughter.
“I would not have the education and the career path I have today without First State School,” she said.
Tiberi, who required frequent blood work, remembered that school nurses helped her to overcome her fear of needles. A social worker offered encouragement and daily hugs.
“It’s a family, not just a school,” she said.
Founded in 1985, the school is the brainchild of Janet Kramer, M.D., former director of Adolescent Medicine at Christiana Care.
“We were seeing adolescents who were chronically ill, missing school and getting left back,” Dr. Kramer said. “In a school setting where they can also receive medical care, they aren’t stuck. They can get an education and learn to take care of themselves in terms of social interaction and future employment.”
In the beginning, First State School served only high-school students. The program was expanded in 1991 to grades K-12, with students age 5 to 21.
The school is a partnership between Christiana Care and Red Clay School District, which provides teachers and other educational staff.
“Our staff of teachers, nurses, doctors, psychologists and social workers collaborates to meet the educational, physical, emotional and social needs of the children we serve,” said Elizabeth Houser, MSN, RN, program director. “We also work closely with parents, primary care providers, specialists and resources in the community that can help our students to thrive.”
It is the first such school and one of only three schools in the U.S. that focuses on educating chronically and seriously ill students. The school has grown from two classrooms and an office at Christiana Hospital to its state-of-the-art Wilmington campus, where classrooms are equipped with interactive whiteboards, laptops and tablets, as well as devices that help students with mobility issues.
First State School’s mascot is the osprey, and the school offers activities that help students to soar socially, including a chorus, steel drum corps and The Talon, the school yearbook. Students dance at the prom, swim at the YMCA and spread their wings on field trips.
Coleen O’Connor, M.S., NCC, LPCMH, who retired as program director in December, returned for the celebration. She embraced former students, many of whom she stayed in touch with after graduation through Facebook.
“It’s truly inspiring to see these young people learn to manage their illnesses, overcome challenges and succeed in life,” O’Connor said.
Over the years, the school has served 300 students. About 30 were so ill they died before graduation. Many of their pictures were displayed in remembrance for the anniversary event.
“When a child died, the staff cried along with the students,” O’Connor recalled. “With advances in treatment, we are not losing as many kids as we did in the early days. Still, we are all very much aware that these students are seriously ill.”
Isaiah Green, who graduated in 2013, came to First State School as a high-school sophomore, when he could no longer attend traditional public school due to chronic kidney disease. At 20, he recently received a transplant and is researching colleges.
“They accommodated my visits to dialysis,” he said. “They helped me with my diet restrictions and medications, which I could not have done on my own.”
Ariana Gibson, a 2009 graduate, suffers from severe Crohn’s disease. Her hips had deteriorated due to steroids used to treat the disease, limiting her flexibility. At 5 feet, 5 inches tall, she weighed only 100 pounds.
“They understood my disease and connected me with a diet that enabled me to put on some healthy weight,” Gibson said.
At 25, Gibson is a preschool teacher. Healthy habits she learned at First State School help her to keep her condition under control, and she is looking forward to furthering her education.
Janay Laws, a 2015 grad, is heading to Neumann University and is the recipient of a youth achievement scholarship. She enrolled at First State School at 12, where she learned about her medications in addition to academics. She represented the school as a finalist in the state Poetry Out Loud contest.
“I am interested in creative writing, and I want to be a teacher,” said Laws, 18. “At First State School, I learned how to achieve my goals.”