Aliyana McCrary has long been a pageant girl. She's 13 now, but her grandmother Jacqueline McCrary got her started when she was only 2 years old. At first, the pageant world was something she did for her grandmother. Now, she loves it herself.
Aliyana is hoping to compete in the East Coast USA Pageant's national finals in July. Haneefah McCrary, Aliyana's mother, launched a crowdfunding page to raise money for Aliyana's registration fees and gown. If they surpass their fund-raising goal, Haneefah said, their Bucks County family will donate the excess money to the Sickle Cell Foundation. Aliyana was diagnosed with the disease shortly after birth.
Sickle cell disease causes misshapen red blood cells that carry smaller amounts of oxygen than their normal, round counterparts. It is an inherited disease that most commonly affects African Americans, though it also is found in people of Hispanic, Middle Eastern and Mediterranean ancestry.
Aliyana, who lives in Falls Township, often experiences headaches, labored breathing and pain crises — a severe attack due to malformed cells blocking blood vessels. But faculty members at William Penn Middle School in Yardley, where Aliyana is finishing eighth grade, say that she's optimistic, sweet, responsible and outgoing. Nancy Castner, her nurse at the school, describes her as someone who doesn't let pain stop her from smiling.
In April, she won Miss Spirit at the East Coast USA's Pennsylvania competition, a regional pageant ahead of nationals.
"It was, like, amazing because it was my first time ever getting a title," said Aliyana, who also placed first runner-up for beauty among the girls her age. "It was like a very important moment for me. And then since I also got a title, I have to go to nationals or I have to forfeit the title, so that's why we're going."
Per East Coast USA's policies, regional title winners forfeit their crowns if they don't compete at nationals, and Aliyana doesn't want to lose that achievement.
Aliyana, by all accounts, is a trouper. Her gym teachers Denise Melnick and Brittany Bigos explained that Aliyana never uses her diagnosis as an excuse to skip class. Rather, she might give them a polite reminder about her condition.
Castner senses that Aliyana, despite the disease and its effects, relies on an inner drive to succeed.
Haneefah doubts that anyone in the pageant world would even know about her daughter's struggles. She doesn't tell the judges about it; she doesn't discuss it as a hindrance.
"The one thing about Aliyana," Haneefah explained, "if she complained about her leg hurting, she will still go out there and try not to show it to anyone, and then come off the stage and no one would even know she was hurt."
A complex disease
When a sickle cell patient is experiencing pain, there are several reactions occurring in the blood stream, said Alexis Thompson, president of the American Society of Hematology.
Pain can arise from the abnormal — at times clogged — flow of blood due to the misshapen cells.
But advances in research over the last 10 or 20 years, Thompson said, have found that beyond decreased oxygen, the sickle shape can injure blood vessel walls in its flow, even leading to scarring. Aside from red blood cells, white blood cells and platelets are also affected, and may release proteins that spur inflammation, which would also cause aches.
"This is how much more complex sickle cell disease is," she said. "It's a disease that affects much more than the blood cells."
There are several types of sickle cell disease. Aliyana has sickle beta plus thalassemia, a form that is often considered milder. But Thompson said a patient with this subtype would still experience the typical symptoms and risks of sickle cell, and should be taken seriously.
Some sickle cell patients receive blood transfusions, Aliyana does not. She has twice yearly check-ups with a hematologist to monitor the impact of the disease and takes penicillin daily, something many children with sickle cell take to prevent pneumococcal infection. She also takes folic acid, which helps with formation of new red blood cells.
Cold water is a trigger for her. Linda Resar, pediatric hematologist and oncologist at Johns Hopkins University School of Medicine, explained that cold liquids, or even frigid weather, can cause blood vessels to narrow. The deformed cells, which Resar called "banana-shaped," would then move more slowly and become stuck. So, Aliyana avoids swimming before pageants, even in the summer.
She most commonly experiences pain in her legs. It may begin, for example, with a sharp pain in one of her knees. "Sometimes, I will feel it going off and for a few minutes," she said. If it abates, she stays in class. If the pain persists with time, "that's when I go to the nurse to get medication."
Castner may give her ibuprofen and ensure that she rest, hydrate and use a heating pad. She has also felt pain in other parts of her body, but if a crisis affects a knee and intensifies, the hurt "could spread throughout the leg." At that point, she begins to have trouble walking. "If it gets worse, that's when they call my mom and I'll probably go home for stronger medicine, which is Oxycontin," Aliyana said of the powerful opioid pain reliever.
If a crisis progresses further, Haneefah takes her daughter to the hospital.
If she runs a fever, that would also call for a hospital stint. Fevers can be a symptom of infections, which are particularly dangerous for patients such as Aliyana. Sickle cell affects the spleen, which filters blood and plays a role in the immune system, so the body of a sickle cell patient may not be as able to fight bacteria.
Haneefah estimates that Aliyana has been hospitalized 15 times since she was born; the last admission was three years ago. In the current school year, Haneefah has had to pick her daughter up from school because of pain just twice. Haneefah credits Castner's attentiveness and care.
Acknowledging when she needs to sit out has been a learning process for Aliyana. She said she resists sometimes because she wants "to be kind of like other people." Hospital visits may be hard, she said, but ultimately, she accepts them.
"It just makes me see like I am different but it doesn't matter because I'll still keep going as best as I can," Aliyana said.
Lessons in resilience
When she was first starting out in pageants, Aliyana would prepare with her grandmother, who gave her a new understanding of resilience.
Jacqueline McCrary was diagnosed with ALS in 2015. She had been living in Florida, but moved back north to be nearer to family. As the neurodegenerative disease took hold, her speech began to be slurred, then she lost mobility in her hands, and, eventually, she could no longer walk. She died last year.
"It was very hard seeing my grandmother like that," Aliyana said. "She tried her best and everything and kept going. So it just tells me to always keep going. Never give up on your dreams. Even though it sounds cliche and everything, but it actually means something to always keep going and live up to the moment. And yeah, just push."
When Aliyana is not bonding with other pageant queens, she loves to practice makeup and dance. She's considering acting or cosmetology for when she's older — she likes having more than one passion to explore.
For Aliyana, pageants are a means to grow confidence and show her true personality.
"Like, when I just walk the stage, I'm just myself," she said. "Just go up there and try your best and have fun. That's the most important thing because if you're not having fun, then that kind of shows during your walk and everything. And that the judges notice."