First State School helps young people live with chronic diseases

First State School helps young people live with chronic diseases

danielle white and her mother
First State School helped Danielle White to feel like she could still live a normal life despite her chronic disease.

For most teenagers, middle school can be an awkward and sometimes unpleasant period of time. For Danielle White of Newark, the middle-school years were some of the most difficult years of her life.

In 1991, at the age of 13, Danielle was diagnosed with myasthenia gravis, an autoimmune disease that causes muscle weakness and fatigue. For her, simple activities like boarding a school bus, climbing a staircase, holding a book-even taking notes in class-made a normal school day nearly impossible.

After her initial diagnosis and a two-year period of treatment for the disease, Danielle and her family eventually had to come to terms with the fact that “regular” school was no longer an option. She needed medications four times a day and missed many classes or entire school days because of the unpredictable symptoms of the disease.

Around that time, Danielle’s neurologist suggested Christiana Care’s First State School . Back then, the school was part of the pediatric wing at Christiana Hospital and didn’t exactly strike Danielle as a happy alternative to high school with her friends.  “At first, I was in a great deal of denial and didn’t think I needed to be in a school for ‘sick kids,'” explains Danielle. “But as soon as I met the caring staff there, I soon realized it was exactly the type of caring, nurturing school environment I needed.”

Now located on Christiana Care’s Wilmington campus, the 23-year-old school is a nationally recognized model that offers kindergarten through 12th grade students with diseases ranging from cancer and diabetes to severe asthma and sickle cell anemia a chance to learn with their peers while receiving the medical treatment they need.

“We have been so fortunate to touch the lives of hundreds of young people like Danielle over the years,” says Coleen O’Connor, program coordinator for First State School. “And what they give back to us is even greater-it’s a gift we get to keep. Like so many of our graduates, Danielle never ceases to inspire us and is such a remarkable role model to so many people.”

O’Connor explains that many First State School students have no choice but to stay home-sometimes for semesters-because of their illnesses. The school’s unique focus on socialization helps students blossom as they discover friendships, camaraderie and education in a medically supportive environment. In addition to teaching staff, First State School offers students access to physicians, nurses and other clinical specialists they may need during the course of the school day.

Beyond getting the care she needed and earning her high school diploma, Danielle says the school gave her much more.

“I realize now that the school’s nurturing, warm environment helped to make me more accepting of myself and my disease,” says the 30-year-old, full-time wife and mom, who is also a part-time student at Wilmington University. In fact, she is close to finishing her bachelor’s degree in behavioral science and one day hopes to come back to work at First State School.

“I’d like the chance to work with young people who had to overcome health care issues as I have and tell them not to be afraid to ask for more help. I wish I had asked for help sooner. I tried to be normal and to fit in, but I eventually had to find a way to accept my disease and keep moving forward.”

And thanks to First State School, students with a wide range of chronic diseases are moving forward with their own lives.

About First State School

Christiana Care’s First State School started in 1985 and was the first of its kind in the United States to combine traditional classroom schooling with the specialized medical care that children with serious illnesses need. To date, more than 240 students have attended First State School.

In January 2009, First State School received an A+, superior rating from the Delaware Department of Education for the second year in a row.