Stem Cell Transplant Puts Sickle Cell Pain in the Past
When 13-year-old Ali Al-Mammari arrived at the University of Chicago Medicine Comer Children's Hospital last summer, he could barely walk due to his severe sickle cell anemia. He ambled down the hallway with a cane, his hips and shoulders locked, with a look of excruciating pain on his young face, despite the medication he was taking.
"At home, he would lie on his bed crying in pain," said his father, Mohammad Al-Mammari. "He was sad he couldn't do things, and we were in the emergency department constantly trying to get him some relief."
Three months after receiving a bone marrow transplant (also referred to as stem cell transplant) at Comer Children's, Ali returned home to the United Arab Emirates no longer experiencing debilitating pain, but rather was running, riding a bicycle and playing soccer. "He was so much more mobile when he left than when he arrived," said Kelly Kramer, advanced practice nurse for the pediatric stem cell transplant program. "And he no longer had any pain. Although he spoke very little English, I could tell he was progressing just by looking at his face."
Today, the cheerful 14-year-old is back to being a young teen, ready to enter seventh grade, loves math and dreams of being a fighter pilot. "He is doing all the things his friends can do," said his physician John M. Cunningham, MD, director of hematopoietic stem cell transplantation and chief of pediatric hematology/oncology. "I visited him in January and Ali is doing well."
Ali's sickle cell anemia was challenging in that he had two problems: constant and severe pain, and blocked hips, said Cunningham. This uncommon, inherited disorder can cause problems ranging from moderate discomfort to profound, lasting pain, widespread tissue damage, stroke and death. Ali had the most severe form of the disease; it had taken over his life.
In collaboration with his physicians in Abu Dhabi, plans began to bring Ali to Chicago for treatment that would improve his quality of life. When the family arrived, Cunningham's team determined that Ali was indeed a good candidate for a bone marrow transplant. And there was even more good news: "He was lucky that Omar, his 12-year-old brother, was an ideal donor," said Cunningham.
"Omar was very cooperative and wanted to help his brother," said Al-Mammari. "Having a match with his own brother made it special. We were very happy."
The Center for International Patients assisted the family with all their needs, arranging translation services, transportation and accommodations while in Chicago. "The Center's staff also gave us moral support and helped build trust and understanding with the medical staff," said Al-Mammari.
After the transplant and two months in the hospital, Ali needed to regain his strength and coordination. He received that help at the Rehabilitation Institute of Chicago (RIC), where his treatment included daily exercises, therapy sessions and age-appropriate function goals, such as dribbling a ball so he could play soccer again.
"Although it is rare for patients with sickle cell disease to need a transplant, our team has performed more than 40," said Cunningham. "Few programs worldwide have as much experience. Besides sickle cell disease, we care for children and young adults with high-risk leukemia, lymphoma and other genetic diseases. We have a highly experienced and sophisticated team to handle these tough cases."
The Al-Mammari family has high praise for the staff at Comer Children's and especially their physician, Dr. Cunningham. "He is one-of-a-kind and very much like part of our family," said Al-Mammari. "Not only is he a great doctor, but he's a wonderful human being, and really like another father to my son Ali."