Nile Price fought a difficult battle with sickle cell disease, but he has come through it victorious.
While he suffered the pains and multiple hospitalizations caused by the disease, Nile’s family reached out to the community for assistance. They encouraged potential bone marrow donors to be tested. They held local fundraisers and opened a One-to-One Fund at The Bone Marrow Foundation to help pay for medical expenses, like doctors visits and medications.
Their efforts were successful. Two donors were found, and at the age of 13, Nile underwent an allogeneic bone marrow transplant. Two years later, Nile and his family met the woman whose donation cured his sickle cell disease.
In the years following his transplant, Nile suffered graft versus host disease (GVHD) which has affected his skin and muscles. Fortunately, with the support of his family, Nile is growing stronger. His doctors are reducing his medications and have released him from physical therapy.
Nile is proud of the progress he has made, saying, “I knew I was going to get back to where I was. I just didn’t know how long it would take.”
Read more about Nile and his transplant journey:
Meet Alan, Michael, and Marc. They are the latest Lifeline Project participants to be profiled in our ongoing series highlighting the needs of transplant patients.
In September 2009, just one month after his mother passed away, Alan was diagnosed with acute lymphoblastic leukemia (ALL). During his grieving period, Alan began treatment, which included multiple doctor visits, hospitalizations, many rounds of intense chemotherapy, full-body radiation and blood transfusions – culminating in a month-long hospital stay for his bone marrow transplant. Alan is in need of funding to help cover his transplant and treatment expenses.
Michael successfully underwent a stem cell transplant to rid himself of non-Hodgkin’s lymphoma. The success of his transplant gave him a “new lease on life.” Unfortunately, he is having difficulty finding suitable work, since there are few environments that will not compromise his immune system. While he is waiting to fully recover from his treatment, he could use assistance covering the costs of his transplant expenses.
At just three years old, Marc was diagnosed with acute lymphoblastic leukemia (ALL). After a relapse during maintenance therapy, he had a bone marrow transplant. Following his transplant he was diagnosed with graft-versus-host disease (GVHD), causing liver and intestinal problems, and he must take sixteen different medications each day. He is one of six children to a single mother. His illness has been extremely financially and emotionally difficult for the entire family and they need help covering his treatment expenses.
To help these or any of the Lifeline Project participants, click here.
Allogeneic bone marrow/stem cell transplants (BMT/SCT), by definition, rely on the availability of a healthy donor whose bone marrow is biologically compatible with the recipient – what doctors refer to as an “HLA match.” HLAs, or human leukocyte antigens, are protein “markers” found on the surface of white blood cells. They serve as a kind of genetic fingerprint, enabling the body’s immune system to recognize the body’s own cells. HLA markers occur in pairs, with one part of each pair inherited from a mother and one from a father. Therefore, the search for a matched donor begins within a patient’s immediate family. There is a 25 percent (1 in 4) chance that any one brother or sister perfectly matches a sibling’s HLA type. The overall chances of having any sibling who is a match depend upon the number of siblings.
Potential donors need to be tissue-typed, which involves taking a series of blood tests to determine if the HLA “fingerprints” match. If a brother or sister doesn’t match, parents are screened for HLA compatibility, followed by the extended family of aunts, uncles, cousins, etc.
If a sibling or family match is not available, the transplant center should have procedures for finding an unrelated donor through national bone marrow registries, such as the National Marrow Donor Program. They will search a database of donors to identify a potential match. On average, the chances of finding an unrelated donor with a similar ethnic background are 60 to 70 percent. If someone is found, the registry contacts the potential donor with instructions about how to proceed. The identity of the donor is always kept confidential for a period of time following the transplant, after which point the patient and/or the donor are free to contact one another if both give written consent.
As successful as national registries have been in helping identify unrelated donors, many people in need of a BMT/SCT are unable to find a matched donor. To help fill this unmet demand, alternative sources of stem cells are being explored. For example, blood harvested from the umbilical cord of newborn babies (at no risk or pain to them) is a rich source of stem cells, and the use of cord blood in the BMT/SCT setting is increasing.
Related donors who are not exact HLA matches may also present an alternative for BMT/SCT candidates with no matched relatives. These “HLA-mismatched” procedures need to be discussed with the patient’s doctor. Such donors have not previously been a viable option because of the high risk of Graft vs. Host Disease (GVHD) and graft failure associated with such mismatches. Recent advances have helped make this an option in some cases.