About Us
Careers Contact Us
Español
Refer a Patient
Donte Johnson

Chef and music lover Donte was the first patient at St. Jude to be cured of sickle cell disease with gene therapy. 

 

PATIENT STORIES

Gene Therapy Cures Young Chef’s Sickle Cell Disease

 
 

Donte Johnson loves to cook. He learned in his grandmother’s kitchen in North Memphis. When she passed away in 2008, cooking was a kind of therapy that helped him cope.

Over time, it became more than that. Donte started to earn money by cooking for community events.

His favorite things to cook are foods with good spices and sauces. He makes flatbreads and garlic bread; salads; and pastas with chicken, salmon, and shrimp. He is skilled at bringing out flavors with his signature sauces.

His passion for cooking was one of the main things he thought about while he was in and out of the hospital with sickle cell disease. Thinking about food helped keep his mind off the pain.

“I was telling myself everything that I was going to do when I got out, and it was all pertaining to food,” he says. “I was always watching the cooking show and talking to other chefs on Instagram and watching them on TV. I had my mind made up, since I couldn’t eat certain foods: 'When I leave here, I'm going to live it up and eat good every day.’”

Life with sickle cell disease

Donte as child

Donte has lived with sickle cell disease his whole life.

Donte has lived with sickle cell disease his whole life. The condition makes healthy round, flexible red blood cells become stiff and crescent (or sickle) shaped. These sickled cells block blood flow, causing less oxygen to travel through the body.

Sickle cell disease causes pain episodes, yellow eyes, tiredness, and shortness of breath.

Pain episodes come and go. Often, the pain is invisible to others, but it is intense. Anything can bring on pain, such as a change in temperature or cold water.

Donte sometimes missed school for weeks, leaving friends wondering where he was and not understanding his illness.

The yellowing of his eyes also led to teasing and bullying. Those experiences were painful and stayed with Donte, leading to periods of depression and loneliness.

He lost some friends along the way. But the ones who believed in him stayed close.

A second home at St. Jude

Donte first came to St. Jude Children’s Research Hospital as a baby.

Hospital stays were frequent and sometimes lasted weeks. St. Jude became a place where he felt safe. Doctors, nurses, and staff understood him and his disease. There were certain nurses who knew best how to start an IV in his vein.

“I created my own family because I was here a lot,” he says. “So, when something was going wrong, I knew what ‘family member’ to call to help out with it.”

 
 

St. Jude is one of the few centers in the country to have a comprehensive sickle cell center. We have providers trained exclusively to take care of patients with sickle cell disease—not just doctors, but nurse practitioners, psychologists, and social workers. This allows us to provide care that is more focused and better than what you would get at many other hospitals.

Akshay Sharma, MD

 
Donte Johnson and Akshay Sharma
Akshay Sharma and Donte Johnson

Akshay Sharma, MD introduced Donte to the gene therapy treatment that would change his life. 

 
 

A new possibility

As Donte got older, his condition became more serious. In 2018, he had severe pain in his chest and arms. Cold, rainy weather triggered it. He developed pneumonia and a collapsed lung. He needed a ventilator to help him breathe. He was in a medically induced coma for a few days.

Soon after, Donte got a call from Akshay Sharma, MD, a St. Jude physician who had treated him before. Sharma told him about a new clinical trial using gene therapy to treat sickle cell disease. This treatment would use Donte’s own edited blood stem cells to make healthy red blood cells.

Other treatments, such as hydroxyurea, had not worked well for Donte. Another potential option for sickle cell disease is a bone marrow (stem cell) transplant. But Donte did not have a suitable donor.

With gene therapy, Donte could use his own cells.

“I didn't have anybody, and God made a way for me to fix myself,” he says.

He jokes now, “I cured myself!”

CRISPR gene therapy

The treatment uses a tool called CRISPR-Cas9. It edits DNA inside the patient’s cells. The edited blood-forming stem cells are then put back in the body. The goal is to stop the crescent-shaped cells from forming.

The process took several months. Donte got chemotherapy to prepare his body. This helped make room for the edited cells.

The chemo caused challenging side effects. He lost his hair, developed painful mouth sores, felt weak, and sometimes struggled to eat. At times, he felt like he was fighting for his life.

His faith and the steady support of his medical team and family helped keep him going. While in the hospital, he dreamed of a future without sickle cell disease.

He pictured cooking, and he listened to music like jazz and R&B, “music where you can hear the instruments and the bass.”

After gene therapy, for the first time, Donte’s body had a chance to heal.

Looking ahead

Recovery took time. While the gene therapy stopped the disease progression, some damage remained. Donte continues to have issues with his eyesight, knees, heart, and stomach.

He takes his health seriously, focusing on eating well, staying active, and avoiding habits that could cause harm. He understands that the cure protects his future, but it cannot erase the past effects of illness.

Now 25 years old, Donte returns to St. Jude for follow‑up visits as part of a long‑term study. Staff greet him by name and welcome him back like family.

Donte is earning his truck-driving license to save money for a food-truck business. He plans to name his food truck “Sauced Up Kitchen.”

He wants his business to reflect his experience and help raise awareness about sickle cell disease. One day, he plans to expand the food truck into a lounge featuring food and live music. All of this began during his days in the hospital, envisioning good food and hearing good music in his head.

 
 

More patient stories

 
 

Close
Close