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Partial-match transplants are offering sickle cell disease patients new hope for significantly improved health and possibly even a cure. The possibilities these transplants present illustrated by the three scenarios below, once again highlight the important role that familial support plays in each patient’s health journey.

Michelle Jordan’s 13-year-old son, Timothy, had experienced great suffering from sickle cell disease since birth, including significant pain, frequent blood transfusions, damaged kidneys and even a stroke at age 11.  Upon being told that Timothy’s doctors in Summerville, South Carolina, did not have the expertise to perform a risky type of bone marrow transplant, Michelle demonstrated a mother’s love and dedication as she had countless times before: She desperately drove him to Johns Hopkins Hospital in Baltimore, without an appointment, where doctors were doing partial-match bone marrow transplants for sickle cell patients.

The chances of finding a bone marrow donor whose immune system is a perfect match to that of the patient is difficult at best. Some have said it’s virtually impossible.  Yet bone marrow transplants are reported to be the only potential cure for sickle cell disease; sufferers have a life expectancy of around 50 years of age.

Though sickle cell disease is the most common inherited blood disorder in the United States affecting about 100,000 Americans, available treatments were limited to pain management and blood transfusions until recently.  Furthermore, several potential drugs are not ready to be brought to market.

However, a ground-breaking technique has rendered parents a half-match to children and siblings are possible partial matches, too.  This has significantly widened the pool of potential donors.

Transplants are not an easy process. A patient’s immune system must be significantly weakened with chemotherapy as well as radiation.  Also, there is always a risk that the bone marrow will be rejected by the patient’s body.

Timothy’s donor was his older sister, as Michelle is his biological aunt. His recovery after the transplant was difficult but approximately 18 months later, he can attend school, plays football and aspires to become a Navy Seal.

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Descriptions of the pain some patients suffer is mind-numbing. Jensen McDonald’s battle with sickle cell also included regular transfusions and a hip replacement at 10 years old because his tissues had deteriorated so badly.  He’d been to the hospital over 100 times, to manage excruciating bouts of pain and to treat fevers because his immune system was too weak to effectively fight the underlying infection.  Descriptions of his parents’ attempts to alleviate his pain as an infant are quite touching and yet heart-wrenching.  One can scarcely imagine the helplessness they felt unless one has experienced a similar situation.

Jensen’s mother, Dagny, is a 50 percent match to Jensen and, as such, became her son’s bone marrow donor.  Though Jensen could not imagine any significant improvement, they tried anyways.  A life-time of pain and suffering had not only damaged his body but also his spirits and dreams. We’re glad he persevered and underwent the transplant, regardless of his crippled hope. Though his recovery has been difficult, his pain is nearly non-existent now and he has not had to endure any blood transfusions since then. Jensen’s father, Hans, has firmly expressed his faith that not only will God do the rest, but his son will eventually be able to lead a normal life.  Once again, belief that a cure is possible has led a family to pursue an option without promises from doctors.  Thankfully, an important battle has been won in that Jensen is experiencing almost no pain. We are very happy to hear this positive outcome in Jensen’s health journey.

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40-year-old Lashanta Whisenton of Washington had also been plagued by sickle cell disease since birth. As with so many other patients, she often experienced serious bouts of excruciating pain and spent much time in hospital. Unfortunately, a transplant was not initially possible for her because she did not have a familial donor: both of her parents are deceased and she does not have siblings that are a match.

Her 10-year-old son’s unreserved love for her was so evident when she approached him about being her bone marrow donor. Surely it was hard for her to ask him for such a special and precious gift. He refused her explanation, stating that he wanted to do whatever he could to help her.  At such a tender age, it was likely difficult for him to understand the medical implications yet he had no thought for himself.  He obviously understood the most important aspects of the situation: his mother was gravely ill and suffering. Moreover, he could help stop her suffering by becoming her bone marrow donor.  This is what he needed to understand in making the decision.  In his mind and heart, the rest was unimportant.

Lashanta’s vision for what her life could be inspired enough hope for her to take a step of faith and try the treatment.  She had visions of going on vacation, sitting on a beach, going skiing…

In the end, the treatment was successful.

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We’re excited to hear reports that the overall success rate of these partial-match transplants has increased dramatically. Although the process is expensive, it is usually covered by insurers, including Medicare and Medicaid. It has also been stated that partial-match bone marrow transplants can help reverse organ damage caused by years of oxygen deprivation. In the story above, Lashanta’s doctors say her spleen and kidneys are actually improving. This is truly wonderful news, giving hope for the possibility of living a normal life to sickle cell disease patients.

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