Meet Sebastian. Sebastian is 6 years old and like most little boys he is precocious and fun loving. He loves being outdoors playing soccer and basketball. He has an aptitude for languages and music so he also speaks French and has memorized all the songs from the Disney Channels “High School Musical.” He is a typical little boy in every way save one: Due to illness Sebastian doesn’t spend much time with other little boys and girls. He is educated in the home and his “playmates” are the doctors and nurses at St. Jude Hospital in Memphis, Tennessee. Sebastian suffers with Sickle Cell Disease.
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Sickle Cell is an inherited disease of the hemoglobin, the oxygen carrying substance of red blood cells. The oxygen starved cells change shape becoming jagged (sickle shaped) and sticky causing chronic pain, damage to organs like the heart, kidneys and liver. For many, it causes premature death. The disease affects 80,000 Americans and millions of people around the world. Another 2.5 million people here in the states carry the disease and have the potential to pass the disease on to their children.

There is no cure for SCD. Doctors are still consigned to pain management. The only medication approved for treatment of the disease is Hydroxyurea, which has proven effective in increasing the oxygen carrying capacity of the blood thus preventing pain crisis in patients. There are also promising strides being made in umbilical cord and adult stem cell therapy. That is what brought Sebastian to Memphis.

When he was 3-years-old Sebastian suffered a stroke which paralyzed the left side of his body. Months of physical therapy have restored the use of his body but in order to guard against another stroke he has been on a steady regimen of blood transfusions, which have also lead to a steady rise in the iron levels in his blood. It is one of the dangerous side effects of transfusion therapy. Unfortunately, the treatment for iron overload is an 8 hour injection of medication. It’s a lot for a kid to deal with, but being a pin cushion is something patients of sickle cell get used to.

The stroke, however, also meant that he was one of the limited patients eligible for a stem cell transplant.

Sebastian’s ordeal offers a prime example of why sickle Cell awareness campaigns are so important. As important as it is to educate parents and educators about Sickle Cell Disease, it is sometimes more important to educate those in the health care profession.

Sebastian’s parents didn’t discover their son was eligible for a transplant through their oncologist, but through a family friend that was up on the latest information from the SCDAA. Their doctor continued to tell them there was no rush. The fact is that after an "attack" to a major organ, the sooner a patient has stem cell treatment the greater the chance of success. The therapy is still in its infancy, but there was every reason to rush. SC patients also consume large amounts of pain killing drugs. Unfortunately, so do drug addicts and hospital workers are often unable to distinguish the two. Patients often suffer needlessly because care givers refuse to medicate them for fear of feeding or creating an addiction.

The good news is that Sebastian’s body accepted the stem cells harvested from his father. The bad news is that two months after his transplant a virus began to attack the donor cells. In case his body rejected his father’s cells his own cells had been frozen. Three weeks ago his cells were given back to him. He is currently resting and allowing his body to fight the virus. With any luck they will be able to try another transplant in a few months time. The folks at St. Jude do not promise miracles, but they do offer hope.

Hope, however, is not enough. In addition to awareness there is a need for funding for research of new treatments that will hopefully lead to a cure. Through education and philanthropy we can whip this thing. Kids like Sebastian are depending on us.

For more information contact the Sickle Cell Disease Association of America www.sicklecelldisease.org

 Joseph C. Phillips is the author of “He Talk Like A White Boy” available wherever fine books are sold.