Finding a sisterhood in an unlikely place
By Allyson Bird
Office of Development and Alumni Affairs
Amauri Bowman received an unexpected gift while resting in the hospital during a painful episode with sickle cell anemia a few years ago.
The jewelry kit came with a note inviting her to join a group called Sickle Cell Sisters when she turned 13. This unique sorority, the note explained, brings together local teenage girls who struggle with the same blood disease.
“I thought it would be cool to meet other people who had sickle cell and who know what I’m going through,” Amauri said. Now in her second year as a sister, the 14-year-old Porter-Gaud School student said, “It ended up being exactly what I expected.”
The sisters get together for an outing every other month during the school year. They make jewelry. They bowl. They throw a paint splatter party.
The Sickle Cell Sisters program relies on support from the YES Campaign, an annual campaign in which employees donate toward education, patient care and research projects.
The program is therapeutic by design but never forced.
Child Life Specialist Melissa Hale said she and the other organizers don’t lead the conversations. They simply provide the setting.
“At first, they are just getting to know each other,” Hale said. “By the second meeting they start talking. Then they open up more and ask, ‘Do you have ports?’ ‘When do you go for transfusion?’ They talk about things they can’t talk about with other friends who don’t have sickle cell anemia.”
Sickle Cell Sisters operates on $2,500 of annual funding from the YES Family Fund. The campaign, which stands for Yearly Employee Support, encourages MUSC employees to donate toward education, patient care and research projects in need of extra cash.
“Without the grant, there would be no group,” Hale said. “The YES Family Fund supplies us with the means to provide these girls with an opportunity that they might not otherwise have -- the opportunity to spend time with other girls who share the same medical treatments and experiences.”
For the past decade MUSC’s Child Life specialists have recruited members of Sickle Cell Sisters through the hospital’s clinic. They sent out about 40 letters and bring in 10 new high school-aged girls, on average, each year.
The sisters splurged at the end of last year with a spa day. Each of the girls enjoyed a manicure and pedicure, followed by lunch at P.F. Chang’s, where they could each order an appetizer, entrée and dessert.
“They thought that was the coolest thing,” Hale said. “It’s definitely not what some of them are used to.”
Amauri said she most enjoyed visiting Charleston Cooks! and learning how to prepare healthy dishes. She and the other girls made and then feasted on ham and cheese crepes, fruit parfait, grilled chicken salad and baked and fried doughnuts.
Amauri also appreciates the open dialogue that accompanies the activities.
“Sometimes we feel like you need to talk about it, like if they just changed my medicine again,” she said. “They are going through the same thing I am.”