Mar 8, 2023, 3:31:18 PM CST Aug 31, 2023, 4:44:19 PM CDT

Aliciya doesn’t let sickle cell disease stop her from dancing

Aliciya, at 12 years old, takes a brave lead in her sickle cell journey with the support of her care team at Children’s Health.

Little girl holding flowers while posing for a picture Little girl holding flowers while posing for a picture

Outside of school, 12-year-old Aliciya spends her evenings and weekends with her dance team. When they're not practicing, they're traveling around Texas for competitions. In school, Aliciya's favorite subjects are history and science.

"I'm becoming more interested in science because I want to learn more about my sickle cell disease and I'm thinking about becoming a pediatrician," Aliciya said.

Young girl shows off t-shirt designHer interest in sickle cell has also peaked thanks to her care team led by Alecia Nero, M.D., pediatric hematologist at the Children's Health℠ Pediatric Sickle Cell Program, who has empowered Aliciya to become an advocate for herself and others who live with sickle cell. In fact, after noticing Aliciya had an interest in drawing, her care team nominated her to design the sickle cell program's 2022 t-shirt in recognition of National Sickle Cell Awareness Month in September.

"My design has lots of colors and I wanted to show people what a sickle cell looks like," Aliciya said. "For people who have sickle cell, it's something that shows who we are."

A lifetime of gratitude for Children's Health sickle cell experts

In the summer of 2010, two weeks after Michel welcomed her daughter Aliciya, doctors shared that her newborn baby girl had sickle cell disease.

Sickle cell disease affects a person's red blood cells – changing them from being soft and round to hard and crescent-shaped. When this happens, the abnormal red blood cells have a difficult time moving through some veins, causing them to build up and limit oxygen to the rest of the body. When this happens, it can cause severe pain, organ damage and sometimes stroke.

"Getting the diagnosis was a shock because neither of us had people in our family with sickle cell. All of the sudden, I'm hearing that my new baby has a life-long medical condition," Michel said.

Aliciya became one of the hundreds of kids who receive comprehensive sickle cell care at Children's Health as soon as they're born. And over the next year, Michel frequently rushed Aliciya to the Children's Health Emergency Department.

"Her fevers would come on quickly and they could last for days. It was hard to see a baby so sick and often really uncomfortable," she said. "We're lucky to have Children's Health sickle cell experts help us through everything from the day she was diagnosed."

Before celebrating her first birthday, Aliciya needed three blood transfusions. Her doctors also monitored her enlarged spleen.

"As soon as she turned one, we decided that her spleen needed to be removed," Michel said. "The surgery really shifted her health toward the positive. She's had a couple of pain crises that were bad enough we needed to go to the hospital, but we can call ahead and tell them we're coming and they're ready for us."

Michel remembers the doctors and nurses who walked her through those first really intense months. She learned how to identify when Aliciya was on the verge of getting a fever, how to avoid infection or was at risk for a severe pain episode.

"One of the scariest parts of sickle cell is the severe risk of a stroke. So, for her entire life, the doctors have monitored her brain to make sure there's no risk of clotting," Michel said.

Consistent check-ups help Aliciya stay out of the hospital and pain-free

Now, 11 years after her spleen was removed, most of Aliciya's care is preventative. Once a year Aliciya gets a brain ultrasound to measure the blood flow to the brain. This can predict her risk of future stroke events and allow her team to offer them preventive treatments to minimize her risk of a stroke. Her care team checks her blood counts and checks her organ function since sickle cell disease can lead to damage to her organs

In between visits, Michel keeps a close eye on Aliciya's health. She stays in regular contact with her school and makes sure her teachers know what to do in case Aliciya does need medical attention.

"I'm lucky that my pain isn't as bad as a lot of other kids' pain. I get tired sometimes during dance rehearsal, but as long as I drink a lot of water and have a snack I'm usually okay," Aliciya said. "Most of my friends don't even know I have sickle cell."

When Aliciya does experience pain, it's usually in her back. Along with specialized pain management support, nutrition is one of the key parts of the Children's Health sickle cell program.

Little girl wearing a pink dress posing for a photo"We've been fortunate to have Dr. Nero help us find ways to manage most of Aliciya's sickle cell through her diet, staying hydrated and resting when her body tells her to," Michel says. "That first year was really hard. Now, being able to see my kid pursue dance despite having a serious medical condition is amazing. Children's is a big part of our success."

Recently, Dr. Nero introduced Aliciya to Dr. Dawn Johnson, Medical Director of the Children's Health Primary Care Clinic. Dr. Johnson has dedicated a significant amount of time to state and national organizations to improve access to care, education and support for sickle cell families.

"Dr. Johnson understands a lot of what's happening to me and how it makes me feel, without me having to tell her," Aliciya said. "It's really cool that she knows so much about sickle cell and it makes me want to learn more."

I want her to find strength in everything she does, even the hard things. The Children’s sickle cell team has set us on a path to health and because of them, I know Aliciya’s sickle cell won’t hold her back.

Michel is grateful to the sickle cell care team for bringing Aliciya into conversations about her health and how to be an advocate for herself as she grows up. She's proud of her daughter for bravely taking the lead and being confident in her medical care.

"I want her to find strength in everything she does, even the hard things. The Children's sickle cell team has set us on a path to health and because of them, I know Aliciya's sickle cell won't hold her back," Michel said.

Learn More

Children's Health℠ uses the latest treatments and pain management techniques to care for more than 1,000 children with sickle cell disease each year. We bring many different doctors together – including hematologists, neurologists, nephrologists, psychologists, general pediatricians, endocrinologists, bone marrow transplant doctors, surgical specialists and pulmonologists – to evaluate your child. Learn more about our Pediatric Sickle Cell Disease Program.

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