With individualized care at St. Jude, Elani is ready for the world

Just days after she was born, Elani was diagnosed with sickle cell disease, devastating the family which prayed for her arrival and already had big dreams for the tiny girl’s future.

“Initially, here’s this beautiful baby that you’ve been given,” said her mom, Darnita. 

But her baby would face a lifetime of challenges.

Sickle cell disease is an inherited blood disorder in which red blood cells become sickle- or banana-shaped and can’t move through the blood vessels easily. 

The disease can cause lifelong health complications that include pain crises and a shortened life expectancy.

In 2016, when Elani was 10, the family moved from Alabama to Mississippi, and Elani soon was accepted as a patient at St. Jude Children’s Research Hospital®. 

 According to the CDC, sickle cell disease (SCD) is most common among people with ancestors from sub-Saharan Africa, South America, the Caribbean, Central America, Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece, and Italy.  However, people of any race or nationality can have sickle cell disease.  One in every 365 African American babies born in the United States has sickle cell disease.

The disease is characterized by a multitude of symptoms including painful swelling in the hands and feet, fevers, chest pain, trouble breathing, delays in growth or the onset of puberty, and strokes.

Today, with early diagnosis and advancements in treatment, most children in the United States with sickle cell disease survive into adulthood, and some may live to age 50 or older. 

For more than 60 years, St. Jude has been committed to understanding, treating and finding cures for sickle cell disease. St. Jude has one of the largest pediatric sickle cell programs in the country.

‘The biggest bonus’

Being accepted to St. Jude was a welcomed surprise for Darnita. She knew about the cutting-edge work St. Jude was doing to treat childhood cancer patients, but she wasn’t aware of the hospital’s work involving sickle cell disease. 

“No one ever told me that being a sickle cell patient, you could be accepted to St. Jude,” Darnita said. “That was just the biggest bonus for us, relocating to this area, because I had no idea she could have received that type of treatment.” St. Jude provides clinical care for all pediatric patients with blood disorders that live within the hospital’s catchment area, including Memphis and the surrounding communities.    

Elani is now a freshman in college — nine hours away from mom. But she’s equipped with the tools St. Jude gave her to handle her sickle cell disease away from home and all on her own.

“It’s a lot to manage, but St. Jude has been awesome in teaching us,” Darnita said.

At college, Elani is studying food and beverage entrepreneurship and plans to open a bakery, a big dream inspired by the baking she did to keep busy during the COVID-19 pandemic.

She started out with bread, then treats for friends and family and hundreds of cookies for a high school fundraiser. 

“Because I’m in pastry school, it’s more baking than traditional classes,” Elani said.

English and history can wait when there are cakes and tarts to be made.

Elani’s care at St. Jude

When Elani was younger, she said she was admitted to the hospital every three months for a pain crisis. Treatment with hydroxyurea has helped to greatly reduce her symptoms including episodes of pain. 

With an individualized care plan designed by St. Jude medical staff just for her, Elani thrived. Darnita didn’t stand in her way. 

“I could do a lot more,” said Elani, who is 18. “We would get so excited just watching my hemoglobin go up.” 

Elani did a lot: volleyball, theater, choir, clubs and volunteer work. She went to her prom and hung out with her friends, who all know she has sickle cell disease.

“I always make an effort to let people know. I don’t feel like it’s something that should be kept a secret,” Elani said. “I feel like the more people know about it, the more it can be normalized.”

She’s done the same with her friends at college. They know how to help if there’s a health crisis. And it gives Elani an opportunity to educate them about sickle cell disease.

When Elani was younger, Darnita was incredibly careful. Cold weather could make Elani sick. Air travel did make her sick.

At St. Jude the staff helped her prepare Elani for air travel. And she didn’t get sick.

Darnita no longer needed to treat Elani — a child she prayed hard for— like she was fragile.

“The care at St. Jude helped us to not focus on her illness and focus more on her holistically. St. Jude didn’t just treat sickle cell, they treated Elani,” Darnita said. “They thought about her mental well-being, they thought about dental, things that we didn’t even think about.”

St. Jude staff members educate parents and children about the critical role dental hygiene plays in the treatment of patients with compromised immune systems.

St. Jude staff helped Elani navigate going into high school and then on to college, how to advocate for herself and make the transition to adult sickle cell care.

“They started planting all kinds of seeds at the right moment in her life,” Darnita said. “So, when you have that kind of support behind you, you feel like there is no reason to hold her back.”

And with the continued advances in the treatment of sickle cell disease, Darnita is optimistic that Elani will enjoy a long and exciting life.

Elani won’t let sickle cell disease dictate her choices. She intends to study and travel in the U.S. and Europe.

Elani has become a passionate advocate for sickle cell disease awareness and      St. Jude.

“I love St. Jude so much,” Elani said. “St. Jude gives you so much hope.”