Their initial shock turned to excitement when the sonogram showed she carried a boy
Tired of the snow, Carla Sinclair-Lewis, her husband, Delaun, and their two girls moved from New York. However, shortly after the family arrived in Florida, Carla learned she carried another child. Their initial shock turned to excitement when the sonogram showed she carried a boy. “He could carry on the family name,” they realized and the family’s excitement grew with Carla’s stomach in anticipation of the addition to the family.
The day finally arrived, and Carla gave birth to Shamar Lewis on April 14, 2002 and Shamar received the standard blood test. “No news is good news,” thought Carla as a couple weeks passed. When the doctor called and told Carla her son had Sickle Cell Disease, she hung the phone up in shock. What did I do wrong? she asked as any mother would. How can I stand to watch him suffer with this disease? she wondered. But she had done nothing wrong. She and her husband both carried the Sickle Cell trait, but did not know it, until Shamar was born with the disease.
The Sickle Cell Disease caused the red blood cells in Shamar’s body to function abnormally. When oxygen levels decrease in the blood, his blood cells stretch out in the shape of a crescent moon blocking off small blood vessels, causing severe pain and depriving organs and limbs of needed oxygen.
Their daily routine changed with the realization that Shamar had Sickle Cell Disease. Monthly blood work, extra precautions to prevent bacterial infections, and fevers characterized their life. Carla knew her son needed extra care for this genetic disorder. She quit her job and began working as a child advocate for the Howard Philips Center for Children & Families, part of Arnold Palmer Hospital for Children, because it provided the flexibility she needed to manage Shamar’s illness.
Carla began searching for a support group in the Central Florida area; she needed others who understood. She found no group. As Carla sat in the doctor’s office with Shamar on her lap, another mother tried to consol her crying daughter with toys. She looked to Carla with hopelessness in her eyes, “Does this pain ever stop?” she asked in desperation because her daughter had been suffering from a weeklong attack.
Carla knew then that she had to begin a support group. Moms, especially, just needed someone to talk with. So Carla and Delaun founded the Sickle Cell Foundation for Enlightenment and Discovery and the Angel Eyes Sickle Cell Support Group to both educate and support families affected with the chronic disease. “The group has grown quickly and has been a place to develop friendships with those who understand,” Carla explains proudly. “We also try to educate about the disease. For example, did you know that African descendants are not the only people who can have Sickle Cell Disease? It is also found in descendants from the Mediterranean Sea area such as Arabs, Greeks, Italians, and Spaniards,” Carla says.
“When Shamar had bronchitis at only three months of age, my personal understanding of the disease and the staff knowing he had Sickle Cell Disease helped customize his care,” explains Carla. Even a fever means a trip to the emergency room for someone with Sickle Cell Disease. Having a hospital that understands the disease is priceless. “Arnold Palmer Hospital treats sickle cell patients seriously,” explains Carla with thankfulness. This brings great comfort to a mom who foresees many visits in her son’s future.
Angel Eyes meets monthly at Arnold Palmer Hospital to support and encourage the “Challengers” – those fighting to overcome the many obstacles of Sickle Cell Disease – and their families.