Her son has survived; now she wants to help other children
When she was just 16 weeks into her pregnancy, Darlene Logan learned that her son would have sickle cell disease, a painful, life-threatening condition.
Instead of soft, round red blood cells, people affected by the disease have hard crescent or “sickle-shape” cells. As a result, they can experience anemia, tissue and organ damage, strokes, terrible pain and a lung disorder called pulmonary hypertension, which can lead to heart failure.
Logan turned to the Children’s Hospital of Philadelphia to obtain medical care for her son, Marc — and CHOP has been there for the family ever since.
CHOP’s team of pediatric hematologists, hematology nurse-specialists, and social workers ensured that Marc received the care and assistance he needed.
Marc was hospitalized numerous times throughout his childhood because of pain crises and often required IV fluids and morphine to lessen his discomfort.
Marc, who turns 24 in October, is headed to graduate school. He graduated from the University of Miami in 2010.
“Our son has done very well. He has obviously suffered with sickle cell over these 24 years, but it’s all about support, environment, the grace of God and good health care,” said Logan, who lives in Radnor.
Sickle cell disease runs in her family, and the condition claimed the life of her 34-year-old niece, Nicole.
Logan serves as the co-chair of the campaign to raise funds and awareness of sickle cell disease and clinical research programs at CHOP.
“We are making strides in the awareness and funding for this disease, but we are not nearly where we need to be,” she said.
“We need to be at the level where a lot of these other diseases are, but we need voices that can make a difference.”
Sickle cell affects mostly those of African, Mediterranean, Middle Eastern and Indian descent. In the United States, the disease impacts one in approximately 500 African Americans. Logan wants more people from the African-American community get involved in supporting efforts to raise awareness for the condition.
“For this disease to be our disease, it’s amazing how we don’t embrace it. It’s just so sad,” she said.
Now she’s working to drum up support for CHOP’s Blue Tag Gala and Silent Auction scheduled for Sept. 10 at 7 p.m. at Hyatt at the Bellevue. Event proceeds fund sickle cell research at CHOP and help the hospital’s Sickle Cell Center expand services to the more than 1,000 children it serves.
Dr. Alan W. Flake, who leads CHOP’s Center for Fetal Research, will serve as the gala’s keynote speaker. Under his direction, the center has been developing a procedure that would represent a radical advance — in utero bone marrow transplants using the mother’s cells.
“Our goal for in utero stem cell therapy is to treat sickle cell disease before any clinical manifestations of the disease occur...the ultimate preventive therapy,” Flake said in an e-mailed statement.
“Our research hopes to take advantage of normal developmental events in the fetus to allow replacement of abnormal blood forming stem cells with normal stem cells in a non-toxic manner to cure the disease. While the approach is currently only experimental, our results are promising and support the potential for this treatment in human patients.”
The research team is working to demonstrate success and safety of this treatment in larger animals. If the fetal surgery is successful, a child would be born without any symptoms of sickle cell.
For information about the Blue Tag Gala call (267) 426-6477 or visit giftofchildhood.org/bluetaggala.