Meet Elani

 

age 13, sickle cell disease

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When Elani was a newborn, she tested positive for sickle cell disease and began taking regular medication. Sickle cell is an inherited group of blood disorders that prevent the normal flow of blood in the body.

Symptoms of sickle cell disease include severe pain, enlarged spleen, abdominal pain and strokes. As a child, Elani suffered pain crises often and was hospitalized for fevers and cold symptoms.  “A lot of Elani’s pain is in her legs,” said her mom, Darnita. “It can be quite debilitating. There’s no real outward sign of sickle cell disease, so it’s overlooked or misunderstood sometimes.”

St. Jude patient Elani

St. Jude patient Elani

When Elani was 10 years old, her family moved, and her care was transferred to St. Jude Children’s Research Hospital. St. Jude is leading the way the world understands, treats and defeats childhood cancer and other life-threatening diseases, such as sickle cell disease.

“When we arrived at St. Jude, it was like our world opened up,” said Darnita. St. Jude doctors changed the dosage of one of Elani’s medications, hydroxyurea.  Almost immediately, her family saw a change in her. “With an increase in the hydroxyurea and having the clinic at St. Jude, Elani has been hospitalized less,” Darnita explained.

Elani, St. Jude patient, with her family

St. Jude patient Elani with her family

Elani’s care team at St. Jude has also helped her understand more about sickle cell disease. She interacts with other sickle cell patients, and Darnita has watched her daughter blossom. “Elani knows she’s not struggling with this alone,” said Darnita. “She sees other kids at the hospital and they’re doing ballet and playing sports and traveling. The connection St. Jude has provided for her has helped her so much.” 

Elani, St. Jude patient

Elani is a creative teen who loves to cook, make crafts and dance. She visits St. Jude for monthly appointments.

“Thanks to St. Jude, we were able to get off the sidelines of life,” Darnita said. “Elani joined a dance team. Our whole world has opened up.”

 
 

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