An event on June 1 aims to raise awareness about a devastating disease, for which thousands of Austinites are carriers, though they may not know it. The Walk for Sickle Cell will offer free health screenings and raise funds to benefit Camp Cell-A-Bration, a summer camp for kids suffering from sickle cell disease.
For Shalana Poole’s daughter McKenna, the camp has been life-changing. McKenna was diagnosed with sickle cell disease at birth, but was three years old before she saw symptoms. The disease affects red blood cells and leaves people extremely vulnerable to infections, and can lead to kidney infections, recurrence of pain, strokes, blindness, and a shortened life expectancy.
Poole has helped McKenna manage the disease, but this past year when she turned 12 was especially painful, she says. “I’ve had to become a student of the disease and an advocate for her,” said Poole.
Sickle cell disease is inherited when both parents pass on a sickle cell trait caused by a single gene, but parents may not be aware they are carriers. Though all newborns in Texas are screened for the trait, that information is often lost when they transition into young adulthood. Limited access to healthcare and health insurance combined with the public’s general lack of awareness can cause parents to unknowingly pass on the gene to their children. In Texas, more than 5,000 children a year are identified to be carriers of the trait, and approximately 180 children each year are diagnosed with sickle cell disease. According to the Sickle Cell Association of Texas Marc Thomas Foundation, 1 in 12 African-Americans and 1 in 36 Hispanics carry the trait.
“With population growth in the City of Austin and large health disparities, the sickle cell population is increasing,” said Alysian Thomas, chief operating officer of Sickle Cell Association of Texas Marc Thomas Foundation. Raising awareness about the disease can slow that growth, she added. Last year, the walk saw over 120 participants and raised over $4,000. “We are aiming to raise $10,000 this year and to screen over 50 individuals for sickle cell,” said Thomas.
It costs $955 to send one child with sickle cell disease to Camp Cell-A-Bration, but the experience is priceless, says Poole. “McKenna says going to camp is the one time of year where she can be free,” she said. Poole says the camp also gives caregivers a much-needed break. “It’s a week where we don’t have to run to the hematologist, the physical therapist. We can actually just be.”
“Many of our campers have suffered from strokes, jaundice, pain crisis, receive chronic blood transfusions, surgeries, acute chest syndrome and damage to their internal organs,” said Thomas. “Although these children battle this life-threatening disease every day, we want to make sure they enjoy being kids.”
“The one thing I’ll say about it is that this disease can be just as significant as cancer,” said Poole. “It can take your life. The pain is real and their voice is real. You may not fully understand it, but it’s real to them, so listen.”