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Sarah "Gabby" Neely-Smith, Severe Congenital Neutropenia

At the thought of a shot, most children will cry or scream, and most adults will flinch and look away—but for one young girl, giving herself a shot is a routine lifesaver.

Before Sarah “Gabby” Neely-Smith could crawl, she was diagnosed with a rare blood disorder, severe congenital neutropenia, which left her vulnerable to life-threatening infections and other illnesses. Now, 12 years later, Gabby has learned how to live with her chronic disease while still being a kid.

Severe congenital neutropenia, or Kostmann Syndrome, is a condition where the body makes too few white blood cells. The once-fatal disease is now treatable through a drug called Neupogen, which stimulates the growth of neutrophils, a type of white blood cell important in the body's fight against infection.

For Gabby, a minor bacterial infection could send her to the hospital. However, that doesn’t keep this active adolescent from doing the things she loves such as painting, ballet dancing, attending school, going to the Children’s Cancer Hospital summer camps and playing with her friends and younger sister.

She doesn’t have cancer, but she has had to overcome many of the same obstacles that young cancer patients face. She has used her own experience to help others going through similar situations.

“My advice to others is to not worry about what others say. Some kids may be bullies but others will be your friends,” says Gabby. “It also helps to know about your disease. I don’t like shots, but I know that I have to take them because they help keep me from getting sick.”

Gabby wasn’t the only one touched by her disease. Her mom, Jill, was so affected by the support and care they received during Gabby’s first year of treatment, that she decided to pursue a career in health care. Currently, she is an emergency medical technician and is earning her paramedic and nursing licenses.

“As the years have passed, we have become more comfortable with her disease and have learned to let her live like a normal kid while still being cautious,” says Jill Neely-Smith. “Each trial has taught us a lesson, and our faith has gotten us through.”

Gabby’s goal for the future is to be a veterinarian, but she also has a bigger dream.

“I want to be that kid on the MD Anderson advertisements who gets to mark through my disease in red because I have been cured.”

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