From the time she was a few days old, Jocelyn Rodriguez has been undergoing treatment for the sickle cell anemia she was diagnosed with at birth.
She’s had 25 blood transfusions, two surgeries and been hospitalized more than 30 times. She’s missed at least half of each school year and has never had the kind of life where she could participate in the regular childhood endeavors for more than a few weeks at a time. In July, she faces the biggest challenge of her challenged young life when she undergoes a bone marrow transplant, an operation that she and her family hope will let her live a normal life.
At 15, she very optimistic that her surgery will cure her of the symptoms that have made her childhood difficult. Before the surgery, she will undergo extensive chemotherapy treatments to kill her immune system, then will receive bone marrow from her brother, Jay, 13, who is a perfect match for her.
"I guess what I want to do most is try and improve the quality of my life, and that's pretty much it," Jocelyn said.
Jocelyn, a freshman at Oxon Hill High School, is one of many African Americans who suffer from sickle cell anemia, a debilitating disease that affects the way the blood circulates in and nourishes the body. The hereditary disease, which can lead to heart attack, stroke, kidney and liver disease, often leads to death in young sufferers.
If her surgery in July is successful, Jay’s marrow will take over and help Jocelyn to produce healthy blood cells. She would still have sickle cell disease, but she would be relieved of the symptoms that have made her sick so often, said her mother, Sharon Rodriguez.
“We’re hoping for a cure,” Sharon Rodriguez said. “We’re hoping this will change her life. It would be life changing for all of us.”
Mature beyond her years, Jocelyn keeps her illness in perspective. She goes to school when she can. She plays viola, cello and guitar, which she is teaching herself. She’s also developing her compositional skills by writing melodies and chord progressions of her own. She credits the popular Maryland-based pop-punk band All Time Low and the San Diego post-punk outfit Pierce the Veil as her inspirations, saying that they’ve gotten her through in times when she felt poorly.
She was treated to a meet-and-greet with both bands recently when they performed in Towson. Members of both bands now wear the purple and teal bandies indicating they are part of Team Jocelyn, the name designated by her family for the hundreds of relatives, friends and strangers who have raised money and provided support for the Rodriguezes.
She has chosen not to let her condition control her life and just wants to live like a normal teenage girl.
“I see that everyone else can do all these things, so why can’t I?” Jocelyn said. “I might not be able to do as much, but everyone has something.”
After years of seeing their daughter struggle with sickle cell, Jocelyn’s parents were looking for a permanent solution when doctors at Children’s Hospital, where she has been undergoing treatment, suggested the bone marrow transplant. Jocelyn and her parents decided to attempt the dangerous surgery, which can either cure her or not help at all. She will be isolated for six months after the surgery, her mother said.
Though state health care will pay for the procedure, her family’s finances have been depleted by 15 years of medical treatment. Sharon Rodriguez, an IT professional, was fired in January because she missed so many days caring for her daughter. Jonathan, 45, a graphic artist who designed Jocelyn’s website, www.thejocelynproject.com, which provides extensive information about sickle cell disease and sickle cell trait, also works as head of security at the Mandarin Oriental hotel in the District. The family also includes Shayla, 28, who owns a home massage business in Alexandria, Va.
To provide money for living expenses and to offset expenses not covered by insurance, the Rodriguez family is holding several fundraising events in the Washington area. An open house at the Empire nightclub in Springfield, Va, on April 30, drew several enthusiastic supporters.
The family is hoping for a big showing at a Pre-Mother’s Day Brunch fundraiser scheduled for May 11 at Proud Mary Restaurant in Fort Washington. The cost of the brunch is $50. Half of the proceeds for each ticket will go to the family. The event will include a meal, entertainment and special treats for Mom. For more information, visit www.thejocelynproject.com or call 301-965-0121.
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