BOSTON (CBS) — Kids who have to spend long days at the hospital can get bored easily, but the WRITERS program at Floating Hospital for Children at Tufts Medical Center is making all the difference for one local boy.
12-year-old Sam Galette of Dorchester has sickle cell disease, a blood disorder that causes recurrent episodes of pain, but Sam has had a particularly hard road.
“Sam has been pretty sick,” says Dr. Cathy Rosenfield, a pediatric hematologist and oncologist at Floating Hospital and Sam’s doctor. “Sam had several strokes this summer and had a head bleed.”
The strokes have left Sam weak on one side and with some speech difficulties. He just underwent a stem cell transplant with the hope it will cure him of sickle cell. All the days he’s spent at the hospital would make anyone stir crazy, but child life specialist Ginny Lewis has found a way to help Sam pass the time.
She was initially inspired three years ago by a young patient named Tariq Johnson, who had a terminal illness.
“I approached him and I asked if he wanted to try writing a story with me or create a book and he said yes,” recalls Ginny.
Tariq passed away two years ago at the age of 15, but before he did, he left behind a published book of fiction called “Agent Unlock.” Out of that, the WRITERS program was born.
Since then, with Ginny’s guidance more than a 100 children have participated and 30 books have been published, including Sam’s “How to Deal with Sickle Cell Anemia,” which provides 20 practical tips.
“They can make sense of their diagnosis through writing,” explains Ginny. “Different children use it in different ways. Some children really like it as distraction. Others like it similar to Sammy for educational purposes, to educate themselves or to educate others,” adds Ginny.
“The end result was so good that we actually took that and published it in paperback form so that we can now give it to other children with sickle cell disease,” says Dr. Rosenfield.
When asked how he felt about publishing a book, Sam replied, “Good and accomplished.”
“I am proud of him and just to see him so happy is a good thing for me,” says Margela Olivier, Sam’s mother. “It helps me ease the pain.”
Sam was recently discharged and is reportedly doing well at home.
The WRITERS program, while based in the Hematology/Oncology Department at Floating, is hoping to expand to other areas of the hospital to reach more children and their families.
For more information go to www.writersprogram.org.