Keone Penn wrote in 2006
Born with severe sickle cell anemia (a disease that afflicts
more than 70,000 Americans and a disproportionate number of African-
Americans), Keone Penn suffered a stroke at age five and endured
frequent episodes of pain throughout his childhood. He received
regular blood transfusions through a chest catheter for his
anemia, to reduce the sickling of his red blood cells and control
his pain. But Keone continued to have pain crises, bone and joint
crises and developed kidney complications.
Keone's doctors began considering a stem
cell transplant as a last resort. Keone's sister, a possible bone
marrow donor, failed to match and no unrelated bone marrow donor
match was found. Keone's doctor, Andrew Yaeger (now at the University of Pittsburgh), decided to try transplantation
with cord blood from an unrelated donor, the first time this had been
tried for sickle cell disease.
At Egleston Children's Hospital (now
the AFLAC Cancer Center of Children's Healthcare of Atlanta), Keone
underwent nine days of chemotherapy to eliminate his own defective bone
marrow cells. On December 11, 1998, Keone's doctor transplanted Keone with a matching cord blood unit that had been previously donated to the New York Blood Center's National Cord Blood Program. His recovery was long
and, at times, extremely difficult. He was readmitted to the hospital
several times, and nine months after the transplant he developed
graft vs. host disease (GvHD) as his newly transplanted cells
began to attack his own body.
Eventually, these complications subsided.
Keone's new stem cells now produce normal red blood cells with normal
hemoglobin. The swelling in his joints has subsided and Keone has
not had any further pain crisis. On the one-year anniversary of
his transplant, Keone's doctor pronounced him cured. Keone will be celebrating his eight year post-transplant anniversary in December, 2006. He graduated from high school in 2004 and plans to train as a chef in culinary school.
"I want to hug the man who thought
of it," Keone told an Atlanta Journal-Constitution reporter
before a banquet honoring cord blood transplant survivors held in 2003. "I just want to give him a big hug and break his ribs
and squeeze him so tight." [See "the hug" in How to Help]
Read the December,
1999 TIME Magazine article:
Note: Unrelated hematopoietic stem cell transplantation is not suitable for all Sickle Cell patients and may be used for certain patients with severe Sickle Cell Disease.