Ball State Alumnus Magazine, Family United in Battle

When Justin and Heather Crews married during their senior year at Ball State, they could never have foreseen the strength and dedication that would be required of them to make it through the years ahead.

"Our life was so carefree when we were at Ball State. It is hard to believe how it has changed," says Heather.

Justin and Heather met during an educational psychology class in preparation for their careers as educators. Justin was a second baseman for the Cardinals, while Heather was an active member of Alpha Gamma Delta sorority and University Singers. After graduating, they moved to Ohio to begin their careers, Heather as a kindergarten teacher and coordinator of a Reading Recovery program and Justin as an eighth-grade teacher of U.S. history and baseball coach.

By 1999, their eldest daughter McKenna was born.The couple was blessed with a second daughter, Sydney, two years later. Both girls were believed to be healthy until the first indication of illness arose with McKenna when she was two years old. Taken to the emergency room aft er showing signs of anemia, McKenna received medication, three blood transfusions, and the diagnosis of Fifth's disease, a common childhood illness.

The trip to the emergency room became the first among several, not only with McKenna but also Sydney. For the next three years Justin and Heather would help both daughters battle life-threatening illnesses, comforting them as much as they could, while hoping and praying a healthy future would be within their grasp.

Within a year of McKenna's first diagnosis, her illnesses became more severe. She developed swollen glands beneath her ears, something that was initially treated with an antibiotic, but when it continued to swell periodically the doctors determined she had Hodgkins Lymphoma.

"I was totally devastated," says Heather. "My three year-old was completely fine
a few days before, and now she had cancer." Then, two days before chemotherapy was to begin, the diagnosis was changed to mononucleosis.

Justin and Heather were relieved, to say the least, but still had no true answer as to why the illnesses were causing such severe reactions. Just six months before the proper diagnosis was given for both girls, Sydney had a stroke, attributed to a reaction from a chicken pox vaccine she received at age 18 months. The stroke temporarily paralyzed her entire left side, and sent Sydney into physical therapy to help her regain the movement and feeling she had lost.

The girls were constantly fighting a chain reaction of illnesses which, over the course of one year, hospitalized them both for more than 50 days. Though drugs solved some ailments, the medication would oft en lead to other complications. In July of 2004, McKenna and Sydney finally received a definitive diagnosis: combined immune deficiency disorder. Positive identification of the disease opened the door to the girls' road to recovery.

Only 30 percent of both girls' immune systems functioned properly. Their lymphocytes, or specialized white blood cells, which are divided into B-cells and T-cells, were only partially fighting antigens. T-cells directly attack antigens, while B cells attach to an antigen, producing cells and chemicals to better destroy the antigen. Without the quality of T-cells and B-cells, the fact that they had a healthy quantity didn't help. It was this fact that had delayed the discovery of the genetic disorder.

"The B-cells can be replaced and fought with IVIG [intravenous immunoglobulin], which is a treatment the girls get through transfusions every two weeks. But the T-cells can only be fixed with a bone marrow transplant," says Heather. "Successful transplants mean no more medication, no more painful IV infusions, no more chemotherapy, no more hospital stays."

In June 2005 Sydney was the first to receive the bone marrow transplant, and in June of 2006 McKenna will receive her transplant.

Even while under a great deal of pressure and stress, Heather and Justin have found strength in family, friends, doctors, nurses, and their daughters. "The support and love has helped us when times have been difficult," says Justin. "We will need them more before it's over."

The couple focuses on the hope that their daughters will one day live healthy lives. Justin expresses how he approaches the family's challenge. "I have always seen this situation as a battle. I am a competitor. I have seen great success and great failure on the baseball field [as a coach and] while playing at BSU," he says. "This competition is much different. It is one we cannot lose, one we will not lose."

On the Scene photos are courtesy of Justin and Heather Crews. Information was compiled by Jaclyn Sharratt, story by Laura Ford.