Sammie Galette is not your typical 12-year old. For one, he was born with Sickle Cell Anemia - a genetic disorder that causes chronic and acute pain and multi-organ disease. He is also a published author.
Sammie is a member of the WRITERS Program at Floating Hospital for Children at Tufts Medical Center. WRITERS (Write, Read, Illustrate, Talk, Expand, Revise, Share) is a bibliotherapy program for pediatric hematology/oncology patients that promotes stress relief and personal expression through writing.
“As far as we know, the WRITERS Program is the only program of its kind in Boston,” said Pediatric Hematologist/Oncologist Cathy Rosenfield, MD. “It provides patients with an outlet to take their minds off their illnesses, express their hopes, dreams and fears and in some cases, educate other children going through similar challenges. That is what Sammie has done.”
Sammie’s book, How to Deal with Sickle Cell Anemia, is a collection of 20 tips from his personal experience on how to live life to the fullest with the disease. His tips range from, “it’s okay to feel scared” (#9) and “think of the things that make you happiest” (#11), to “dance” (#19) and “stay positive” (#20).
A Growing Program
WRITERS, which started as a one-on-one project with a pediatric cancer patient several years ago, has grown and expanded to the point where it is now sponsored by a generous annual donation from philanthropic group Resolution Run to Kick Cancer. The program also received an award in research-practice integration from Tufts University's Child Development Department in 2014. Now twice per week, Child Life and Pediatric Writing Specialist Ginny Lewis holds writing sessions with any patients interested in participating.
“I take dictation and help children with story ideas - anything from their experience as a patient to pure works of fiction,” said Lewis. “Many kids will work on their stories on their own, between sessions. When their story is complete, I work with the patients to turn their stories into real published books.”
Since WRITERS was piloted in 2014 and formalized in 2015, more than 30 books have been published and over 100 pediatric patients have started their own writing project. The Pediatric Hematology/Oncology Clinic keeps the books on hand in the clinic’s Patient Resource Room to share with other patients, families and perspective writers. There's also a digital repository, where children can “browse” the digitized versions of all of the published books created through WRITERS.
The Next Chapter
For Sammie, 2016 was a tough year. He suffered several strokes, causing weakness on one side and affecting his speech. In November, 2016, Sammie underwent a bone marrow transplant – his younger brother, Joshua, was the donor - to try to cure his Sickle Cell Anemia.
“He has recovered well from his transplant and he is progressing as expected,” said Dr. Rosenfield. “We are hopeful that the transplant will be a long term success.”
As he continues to improve and get stronger, Sammie is looking forward to writing again. His next book? Living with Sickle Cell - the day-to-day experience of managing the disease.
For more information about the WRITERS program, visit www.writersprogram.org.
The above content is provided for educational purposes by Tufts Medical Center. It is free for educational use. For information about your own health, contact your physician.