St. Jude survivor Lakia refuses to let sickle cell disease define what's possible

Lakia Baldwin moves with the easy confidence of someone who knows exactly who she is. Her hair and makeup are flawless, heels clicking against the floor, hands moving with precision — styling not only hair, but hope. 

What most people never see are her scars. The ones beneath clothing. The ones that leave no visible mark — the hospital rooms, the pain that slams her body like a hammer. The heartbreak.

Born with the most common and a severe form of sickle cell disease, the 29-year-old entrepreneur, marketing consultant and social media influencer has spent her life in the narrow space between crisis and purpose. It’s a space she learned to navigate as a child at St. Jude Children’s Research Hospital®, buoyed by faith and the support of her family and care team. 

 “I don’t like people telling me what I can’t do,” Lakia said. “When people say, ‘You can’t do that,’ I say, ‘Yes, I can.’ I’m going to take care of myself so I can achieve what I want to achieve.”

A childhood of love — and care

Lakia grew up in Memphis, Tennessee, one of five children raised by her mother. Tia was the oldest, followed by Lakia and her twin brother, Lavontae, then Talia and Aalia. Every evening was spent around the dinner table. Church was just as constant.

The family didn’t have much, but they had each other — and St. Jude.

Lakia and Tia were born with a form of sickle cell disease called hemoglobin SS (HbSS) disease, sometimes referred to as sickle cell anemia, inheriting two copies of the sickle cell gene, one from each parent. Their other siblings only inherited one copy, so they only carry the trait.

Sickle cell disease causes red blood cells to become rigid and crescent-shaped, blocking blood flow and leading to pain crises and serious complications, including organ damage, blood clots, stroke and infection. Even with medical advancements, life expectancy remains almost two decades shorter for sickle cell patients compared to those without the disease.

At St. Jude, the sisters’ appointments were on the same days. Tia dreaded needle sticks; Lakia wasn’t afraid. But what Lakia remembers most is “a whole bunch of love.” Transportation. Meals. A warm welcome every time. “They just took care of us in every way possible,” Lakia said.

As a child, Lakia participated in a clinical trial at St. Jude, testing hydroxyurea in children with sickle cell disease. The research would change Lakia’s life.

Hydroxyurea increases fetal hemoglobin, a form of oxygen-carrying protein that does not sickle. An earlier St. Jude study showed the medicine was safe and effective for children, reducing pain episodes, pneumonia-like illness, hospitalizations and the need for blood transfusions.

For Lakia, it meant fewer hospital stays, less pain — and fewer missed moments.

Learning to listen to her body

Even with treatment, her condition required constant vigilance. “I hardly got sick, but when I did, it was always intense,” Lakia said. 

Temperature changes, dehydration, stress, exercise and high altitudes could trigger pain crises. Lakia could swim, but not in cold water. She couldn’t run outside to greet her grandparents without a jacket. She gave up running track and being a majorette. 

“One moment I was fine and the next in full-on crisis,” Lakia said. “It robbed me of my childhood.”

She was meticulous about her care to avoid getting sick. At 18, Lakia transitioned from St. Jude to adult care. The sickle cell disease clinical program at St. Jude and partnering local adult sickle cell care centers have a transition clinic, which helps patients smoothly transition to their adult care providers and avoid lapses in care that can lead to serious complications that affect life expectancy. “I cried like a baby because I didn’t want to leave,” Lakia said. But she left prepared to advocate for herself.

Two years later, in 2016, her spleen suddenly swelled up, a dangerous complication that required surgical removal and left her more vulnerable to infection.

Then, in 2019, during her first airplane trip, Lakia developed a crushing headache. A scan revealed a blood clot at the back of her brain. She remembers waking in a local hospital, her vision blurred and her family being told to prepare for the worst.

“There is a reason and a purpose I am still alive,” Lakia said.

Turning pain into purpose

Not long after her recovery, Lakia began losing some of her hair due to alopecia. A licensed cosmetologist since 2018, she also received a certification in trichology, which allows her to develop her own hair regrowth products. What began as necessity became purpose.

Lakia opened her first salon in 2021, teaching stylists her techniques and creating wigs for clients experiencing hair loss. On social media, she educates and advocates, speaking openly about sickle cell disease, alopecia, faith and self-acceptance. Then in August 2021, Lakia’s sister Tia died from complications of sickle cell disease. “She was truly one of a kind,” Lakia said. Funny. Spontaneous. She loved dancing. Tia earned a nursing degree, worked in hospitals in Memphis and Atlanta, and later opened a boutique. 

“It took me so long to heal from that,” Lakia said. Tia was 26; Lakia had just turned 25. She paid closer attention to her symptoms, moods and sleep. She learned to rest and ask for help when she needed it. 

“My struggles have made me even more determined,” Lakia said. “There’s nothing I can’t get through.”

Choosing forward

Today, Lakia continues to take hydroxyurea, drinks water and eats intentionally. Her faith and church community remain constant sources of strength. “I just try to make the best of every given moment,” Lakia said. 

It has been more than a year since her last pain crisis, the longest stretch of wellness she’s ever known. She understands how quickly that could change. It doesn’t stop her.

To help further sickle cell disease research, Kia participates in the Sickle Cell Clinical Research and Intervention Program, or SCCRIP, which is a long-term study led by St. Jude that follows people with sickle cell disease over many years to better understand how the condition affects patients throughout their lives.

Lakia recently opened a salon in Memphis, where she uses her training in trichology to offer holistic hair and scalp care. She volunteers at health conferences, shows up for clients, and organizes free back-to-school haircuts and styles for kids.

“I want to make sure that I live life,” Lakia said. “That’s why I go above and beyond.”