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One family’s unique bond through sickle cell disease: Aurita’s story

September 20, 2013

Aurita knows all too well what it means to live with sickle cell disease. Sickle cell disease is characterized by abnormally shaped red blood cells that block small blood vessels, damaging tissue in the body. It is an extremely painful disease, but can be managed with treatment.

Sickle cell disease is also hereditary, and can be passed down through generations. Aurita has experienced this in her own family, as she has three sisters: one with sickle cell disease, one who has sickle cell trait and one who is unaffected by sickle cell disease. Both of her parents had the sickle cell trait. Aurita also has a 4-year-old daughter, Kassandra, who has sickle cell disease.

Having been diagnosed with the disease at eight months, Aurita had to learn how to manage the symptoms of the disease at a young age, in order to live a relatively normal life. The hardest part, according to Aurita, is during a pain crisis and the complications that those can bring. The frequency and duration of a pain crisis is different for everyone, but it can often lead to hospitalization. For Aurita, a pain crisis can arise every nine months, or as frequently as every two months, and last up to seven days. It is during these times that Aurita is reminded of the true implications of the disease and its power to debilitate her. She relies on her family and husband to help get her through these often dark and painful days.

Despite the challenging symptoms of the disease, Aurita hasn’t let that stop her from living a fulfilling life. Having moved to the United States from Puerto Rico at age 21, barely knowing any English, she was determined to pursue an undergraduate degree in biology. Her love for science was nurtured by the endless hours she spent researching and learning about her own disease. She married a man who is supportive of her and is there to take care of her, even when she can’t take care of herself.

Having a child with sickle cell disease is hard for Aurita, especially knowing first-hand what she will go through as a result of the disease. Aurita tries to help her daughter understand her disease and learn her limitations. On days when Kassandra is in pain, Aurita can sense it right away, and as any mother would, wishes she could bear her daughter’s pain. Fortunately for Kassandra, she now only experiences a pain crisis once a year, lasting just a few days.

Kassandra has been treated by Dr. Robert Sutphin, pediatric oncologist/hematologist at Arnold Palmer Hospital, since she was two months old. While she doesn’t look forward to the “boo boos,” she is brave, and knowing that the staff will spoil her with their attention and goodies makes the trip to the hospital more enjoyable. For Aurita, there is no other place she would rather her daughter be treated. Knowing that Dr. Sutphin treats her daughter as his own, and will do anything in his power to help ease the pain and symptoms associated with sickle cell disease, gives Aurita a sense of peace and comfort.

Aurita hopes that as her daughter grows up, she will have the confidence to pursue whatever dreams her heart desires. She hopes that the limitations that come with sickle cell disease will not hold her back. She hopes that she will find friends to be there for her when things get hard. She hopes that she will be able to one day get married and have children, if that’s what she desires.

Aurita also hopes that one day there will be a cure for sickle cell disease. The life expectancy for most people with sickle cell disease is in the 40s age range. Many children with the disease still die at a young age, due to complications of this painful disease. Aurita is hopeful that she will beat the odds, so that she can be alive to see her daughter grow up.

September is Sickle Cell Disease Awareness Month, an awareness that is often overlooked. But, it shouldn’t be. In the United States, there are approximately 90,000 people affected by sickle cell disease. There are also more than two million people who carry the sickle cell trait, meaning that they could potentially pass the disease on to their children. Many times, people are unaware that they carry the trait, which is why it’s important to ask your doctor if you are at risk, and get tested.

You can support families, like Aurita’s, by first, educating yourself about the disease. Even if your family is not at risk for the disease, your kids may have friends who are. Secondly, you can help us continue to provide amazing care to kids affected by sickle cell disease by donating to the Center for Children’s Cancer & Blood Disorders at Arnold Palmer Hospital, here.