Patient Stories

Living With Sickle Cell Disease

zhane2-300x280Natasha Hall says her ten-year-old son, Zhane, is one amazing little person.

Zhane was born with sickle cell disease, a blood disorder that negatively impacts his body’s ability to move oxygen to tissues throughout his body.  The disease can result in excruciating pain, serious infections, chronic anemia, damage to body organs or stroke.

Sickle cell disease is a lifelong illness, says Natasha, but Zhane doesn’t let it stop him from living his life to the fullest.

“Zhane is a little fighter,” she says. “He’s very knowledgeable about his illness. He’s a light and encouragement to me in the way he thinks and deals with things.”

Creating the Best Version of Himself/Zhane

Zhane began suffering severe leg and arm pain at the age of five.  At eight, he began experiencing setbacks from his disease which prevented him from doing activities he used to be able to do.  Despite his challenges he doesn’t complain, says Natasha, and he’s a good student who loves to play basketball and football. As an aspiring actor, he’s appeared in a national Chuck E. Cheese commercial and a few local commercials. He is currently auditioning for a small part in a Hollywood movie.

Jennifer Tiller, RN, CPNP cares for Zhane at the Children’s Blood & Cancer Center and says sickle cell disease is an “invisible” illness that is not well-understood by many people. “The effects of this lifelong illness can undermine interpersonal relationships with peers and family members, decrease self-efficacy and self-esteem, and even affect the family’s ability to effectively manage daily challenges and stressors,” she says.

She says Zhane has worked very hard to develop effective and productive coping strategies. He works hard to become the “best Zhane” he can be. “Our constant goal is for our patients and families to have every tool they need to create the most healthy, productive lifestyle possible in the face of sickle cell disease. We could not be more proud of him!”