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An advocate is born
Young patient champions a new cause
Her academic accomplishments and extracurricular activities read like a listing in Who’s Who Among American High School Students: president of the senior class; actor in school plays; member of the National Honor Society; performer in the show choir; competitor in Forensics; member of French Club; varsity soccer team player; and community service volunteer in Key Club.
She has undeniable talent, unlimited potential, real determination, and a bright and promising future. She also is in the fight of her life.
A shocking blow
Abby Hexamer, an 18-year-old honor student, looked forward to reaping the benefits of her senior year in high school. But in February 2008, she began experiencing episodes of fatigue, dizziness, headache and a fainting feeling. She and her parents, Annette and Raymond Hexamer, first sought help from their primary care physician, who then referred them to Akron Children’s Hospital for further evaluation. After a battery of tests, Abby was diagnosed with severe aplastic anemia.
Aplastic anemia is a rare and serious blood disorder in which bone marrow, the spongy material inside the bones, stops making enough new blood cells. These new cells, called stem cells, normally develop into three main types of blood cells: red, which carry oxygen to all parts of the body; white, which help the body fight infection; and platelets, which help control bleeding. A shortage of any of these three types of blood cells will have a serious effect on the body. Severe aplastic anemia that is not treated quickly can be fatal.
“I am a very active person and I’m use to being on the go,” said Abby, who is now prohibited from going to school due to the risk of infection. “This disorder has made me change the way I normally do things, from not being in the school play to not hanging out at the mall because I might catch a cold. I’m definitely learning to adjust and be more patient.”
Aplastic anemia affects three out of every one million people in the United States, although, it is two to three times more common in Asian countries. It can affect people of any age. Its cause may be linked to environmental agents or disease, but often, the cause is not known.
Treatment for the condition varies according to its severity, but may include medications, blood transfusions and bone marrow transplants.
“We typically look for a marrow transplant from an immediate family member as our first step in treatment,” said Jeffrey Hord, M.D., director of the Showers Family Center for Blood and Cancer Disorders and Abby’s doctor. “In Abby’s case, there is no match. Therefore, we’re giving her medication to suppress her immune system, stimulate her bone marrow, and prevent infections. She’s also receiving blood transfusions to increase her blood counts.”
According to Dr. Hord, Abby is responding very favorably to her course of treatment. However, some patients do not fair well without a marrow transplant. In that case, a transplant from an unrelated donor may be their only hope.
Turning lemons into lemonade
Since learning about her condition, Abby is determined to turn this experience into something positive by lending her voice to Akron Children’s Hospital’s “Thanks Mom” Community Marrow Donor Drive on May 16.
“Sometimes, difficult circumstances can bring about really good things,” said Abby. “I’m really excited about getting involved. This drive will help get more people into the registry, which will help patients get well faster.”
According to the National Marrow Donor Program (NMDP), more than 6,000 men, women and children search the registry each day for a life-saving donor. These patients have a variety of life-threatening illnesses, including leukemia, lymphoma and severe aplastic anemia.
The NMDP is a non-profit organization dedicated to making transplants possible for patients who need them. The group not only helps to match unrelated donors and patients, but also helps to streamline the donation process so patients can receive the transplant they need sooner.
“Today, only two out of 10 patients receive the transplant they need to save their lives,” said Susan Neitz, Akron Children’s Stem Cell Transplant Program coordinator. “This drive is an extremely important and life-saving endeavor for thousands of patients like Abby.”
For a successful transplant, a marrow donor’s tissue type needs to match the patient’s tissue type as closely as possible. Race and ethnic heritage play an important role in tissue matches, since tissue types are inherited. Therefore, it is more likely that a patient will match someone from their own race or ethnicity.
“The registry needs to increase the numbers of diverse donors, since diverse patients are not as likely to find a match,” said Neitz. “We hope that everyone, employees and friends alike, will take the few minutes required to register on May 16.”
The NMDP hopes to recruit 46,000 new donors to the registry in 2008, through its “Thanks Mom” marrow donor drives.
FACTS:
Race and ethnic heritage play an important role in tissue matches, since tissue types are inherited. Therefore, it is more likely that a patient will match someone from their own race or ethnicity. People of diverse races and ethnicities are needed to join the registry and help saves lives.
Of the six million donors on the National Marrow Donor registry, fewer than:
480,000 are African American
432,000 are Asian, Native Hawaiian and Pacific Islander
580,000 are Hispanic and Latino
Fast facts
Akron Children’s “Thanks Mom” Marrow Donor Drive
Friday, May 16
8 a.m. – 4 p.m.
Considine Building
Rooms 7 and 8
Free tissue typing from a cheek swab
The National Marrow Donor Program holds its annual “Thanks Mom” donor drives around Mother’s Day each year as a way to pay tribute to the gift of life that mothers give, while providing a way to share that gift with someone else through the registry. |
