JENNIFER AUSTIN...
“Just days before I was walking around feeling fine,
taking care of my family, going to the gym daily, and
working professionally as an advocate for children and
families living in poverty.  I had no medical history of
health problems.  Things were good.”

For nearly two decades, Jennifer Jones Austin dedicated herself to her career as an attorney in the private and public sectors. Although the lure of big money as a corporate attorney danced in her head, social issues concerning children and families tugged at her heart. Her passion allowed her to enhance the lives of thousands of the disenfranchised across New York State, and even today at 41-years-old, she embodies enough beauty and grace that she could easily be mistaken for a former America’s Next Top Model pageant winner.

For nearly two decades, Jennifer Jones Austin dedicated herself to her career as an attorney in the private and public sectors. Although the lure of big money as a corporate attorney danced in her head, social issues concerning children and families tugged at her heart. Her passion allowed her to enhance the lives of thousands of the disenfranchised across New York State, and even today at 41-years-old, she embodies enough beauty and grace that she could easily be mistaken for a former America’s Next Top Model pageant winner.

Looking into her doe-shaped eyes and becoming mesmerized by her infectious smile, it’s easy to forget that she no longer has the long, brown locks of hair, the “crown and glory” that most women would die for. And ironically, the reason she has embraced the Sinead O’Conner look is indeed a matter of life and death.
Austin, a mother of two young children, was diagnosed nearly six months ago with Acute Myeloid Leukemia. “Just days before I was walking around feeling fine, taking care of my family, going to the gym daily, and working professionally as an advocate for children and families living in poverty. I had no medical history of health problems. Things were good,” she said.

But that was pre-AML. For the layman, AML is a cancer of the blood and bone marrow. Acute myelogenous leukemia describes the disease's rapid progression and the fact that it affects immature blood cells, rather than mature ones. It's called myelogenous leukemia because it affects a group of white blood cells called the myeloid cells, which normally develop into the various types of mature blood cells, such as red blood cells, white blood cells and platelets.

As harsh as it might sound, she probably won’t enjoy a silver anniversary with her husband Shawn, see her children graduate, get married, or excel in their careers. According to her doctors, she has very little chance of survival without a bone marrow transplant. To that end, she has elicited a team of family members, friends, and colleagues who are heading up a nationwide bone marrow donor search. However, their search is not for purely selfish reasons—they are hoping to help others who need transplants, as well.

The problem they face, though, is the lack of an African-American donor that would be the most compatible donor for Jennifer. Unfortunately, African-Americans donors make up a small percentage of donors in this country, which is why Jennifer and her band of friends, are holding nationwide drives to raise awareness and to increase the representation of African-Americans in registries like "Be The Match Registry ®,” the new name for the registry operated by the National Marrow Donor Program (NMDP). The organization has been helping patients receive the transplants they need for more than 20 years and the Be The Match campaign was launched in 2009 to engage a growing community of people.

Thousands of patients with leukemia and other life-threatening diseases depend on the Be The Match Registry to find a match. Many potential donors misunderstand the almost painless, free process, which starts with a swabbing of the cheek. Due to advances in medicine, donating bone marrow is as simple as giving blood. The majority of the time, there is no need for a surgical procedure to extract bone marrow. Potential donors can either attend a drive or visit www.bethematch.com and have a kit sent to them, swab their own cheek and send it in for processing.

And no one can tell the importance of registering better than someone who has benefited from it. Dianna Mills of Cold Springs, Texas is on a personal crusade born out of her experience with her daughter, Victoria, which started when she was 7-years-old.

“I noticed that she was not herself. Her symptoms were fatigue and a persistent fever,” she explains.Living in Humble, Texas, at the time, she and her husband, Gregory, took her to the doctor’s office several times. They were told that it was probably a general infection.

“They prescribed antibiotics and sent us home. The antibiotics did not help. We took her back to the doctor several times for about three weeks. One Saturday morning, she became very lethargic. We took her to the doctors’ office one last time. There happened to be a substitute doctor there instead of the normal PCP. She instructed us to call if Victoria did not get better in a few hours. When we arrived home, I decided to conduct my own examination. I did not know what I was looking for, but I used my body to compare to her body. I felt something hard in her abdomen that I did not feel in my abdomen. We immediately called the doctor back and she released us to take Victoria to the ER at Texas Children’s Hospital. After being in the ER for a few hours, things took a turn for the worst and she went into a very critical stage.”

The doctors immediately induced a coma and she remained in the ER for three weeks and still could not get a diagnosis. “We could see her deteriorating before our eyes,” said Dianna, who stated that every day another organ would be affected, and things became worse when her lungs became contaminated and she suffered from respiratory failure. That’s when Victoria was moved to a small room in ICU, which would become their home for the next six weeks.

“I wasn’t in pain,” Victoria said. “I thought I wasn’t going to be there that long.” The thing she remembers the most about the hospital was a lot of needles. It was only after she started seeing several doctors did she realize they couldn’t figure out there was a serious problem. “I knew then something was [really] wrong,” she continued.

She underwent chemotherapy and her treatment included full body radiation. As a result, they were told that Victoria would probably have problems learning and conceiving children.

“On Easter Sunday, the doctors told us to prepare because she was dying. We began to pray feverently as a family.” said Victoria.   Eventually, Victoria was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare haematologic disorder. In short order, the Mills were told that Victoria would need bone marrow from a donor. Their next stop was the Bone Marrow Unit.

Dianna continued, “Searching for a bone marrow match was very difficult. We learned that her match would more than likely be someone from her own ethnic group. That was a hard bit of information to accept because, being African-Americans, we knew that we were not represented on the bone marrow registry like other races. We went on a bandwagon to inform people of how easy it was to register for the bone marrow registry. We tried to educate them that it was as easy as giving blood. We called radio stations; we spoke with everyone that would listen. Through all of our efforts, we still could not find a match. We had to go with only a 50 percent chance from a parent.”

Dianna turned out not to be a strong match. Victoria’s biological father, Rodney Kemper, readily agreed to be a donor. “I was glad, because it was someone I knew,” she said. That was six years ago. Today, Victoria lives life to the fullest. Ever since she has returned to school, she has been on the A/B honor roll and has scored “Commended” every year that she has taken the TAKS test. Even asthma hasn’t slowed down this small bundle of dynamite.

She took up playing the saxophone at Coldspring-Lincoln Jr. High, and was even asked to play last year in the high school band. In addition, she is also a majorette for the drill team. To others who might be facing the same dilemma Victoria says, “Don’t think that you are different. Don’t give up. Keep trying.”



VICTORIA...
was diagnosed with Hemophagocytic
Lymphoistiocytosis (HLH), a rare haematologic
disorder, and needed bone marrow from an African-American
donor to survive.