Stories

Music to your ears

With his love of music and dancing two-year-old Zach Shaw of Baldwinsville, N.Y., might just be a rock star one day. His father certainly thinks so, and with good reason. Zach has already fought for his life and came out on top—the odds should be in his favor.

When Zach was just three months old, his mother brought him to the family’s pediatrician, as he had become very pale. Zach’s hemoglobin was excessively low, and he was rushed to the hospital and admitted to pediatric oncology. He was tested for cancer, leukemia, parvovirus, and numerous other grave illnesses—but was negative for all of them. Finally, after four months of testing, and countless hours of worrying, the doctors realized that Zach had a rare blood disorder called Diamond Blackfan Anemia.

“At the beginning, the doctors had mentioned Diamond Blackfan as a worst case scenario,” said Bridget Shaw, Zach’s mother.

Diamond Blackfan Anemia is a rare congenital disease in which an affected patient has exceptionally low red blood cell counts, while maintaining normal levels of white blood cells and platelets. For reasons yet unknown, their bone marrow is unable to produce red blood cells, resulting in a great variety of symptoms, from mild to life-threatening. Most of the symptoms are related to the lack of oxygen in the blood and include pallor, an irregular heartbeat and extreme fatigue. This form of anemia is exceptionally rare, with approximately 800 cases reported worldwide.

Zach began treatment for Diamond Blackfan immediately. At first, his doctors attempted to use steroids, a common treatment for the disease. But Zach didn’t respond to the steroids. “The only treatment that works for him is blood transfusions,” said Shaw.

“In the beginning it was awful,” said Shaw. “It was a six hour process, and he was just so scared. At his age, you just can’t explain to him what’s going on, that you’re trying to help him.”

But Zach was able to overcome his fears and now takes his treatment has a matter of course. His blood transfusions occur every four to six weeks and take about three hours. During his treatment, Zach is able to watch television or his mother reads to him. He currently take one small unit, although the amount of blood he needs will increase as he grows older. He will need regular transfusions for the rest of his life.

The Shaw family credits blood donors for saving Zach’s life—and keeping him alive and healthy. “Blood donors have no idea the gift they’re giving,” said Shaw. “Just one unit of blood is such a blessing to us. If people didn’t go to donate so graciously, Zach would have died.”

Zach doesn’t let his disease get in the way of having fun. He loves to play with his two older sisters, McKenzie, 5, and Bailey, 4, watch Sesame Street and play with his toy dinosaurs. “We keep a positive attitude. We just won’t let it run his life,” said Shaw. “It’s his little glitch that he will learn to cope with.”

And thanks to blood donors, Zach might be able to realize his father’s prediction of rock-and-roll fame—just as long as he keeps practicing his air guitar.