Tre Robertson Faces Sickle Cell Disease with Levine Children’s on His Side

Tre RobinsonMikki Robertson made room in her heart and her home for her adopted son Tre, who joined her from the foster care system when he was 2.

From the beginning, she knew Tre had sickle cell disease, a disorder in which red blood cells that are typically round are shaped instead like a C, or a sickle. This can make cells stick together and block blood flow, causing severe pain, stroke, infections and organ failure.

Since he was 6 months old, Tre has suffered severe pain crises requiring hospitalization every five to seven months. Throughout his young life, Tre has received specialized care at Atrium Health Levine Children’s, at both Brenner Children’s Hospital in Winston-Salem, N.C., where the Robertsons live, and at Levine Children’s Hospital in Charlotte, N.C.  

Now 11, Tre lives with the effects of the disease. He has suffered damage to his brain, lungs and kidneys, lives with a learning disability and a visual impairment, and his spleen has been removed. He has taken amoxicillin daily for more than nine years to ward off infections. Through it all, he keeps moving forward.

“He’s outgoing,” Mikki says. “When he has a good day, he sings, runs, laughs and plays his games. He’s just a big ball of energy. He doesn’t have a mean bone is his body, gets along with everyone he meets and has never met a stranger.

“Once he wraps you around that little finger, you’re in with him for life.”

‘It Rocked Our World’

For Tre and others with sickle cell disease, pain during crisis events may occur in the chest, abdomen or joints, and it can last for a few hours, several days or longer. Over the course of a year, some patients may have a few such crises, while others may have a dozen or more. Whenever they occur, a crisis requires hospitalization.

Mikki says a major sickle cell crisis that Tre suffered in 2018 and the extreme pain he felt “rocked our world” by threatening his life and drastically impacting his health. She took him to the emergency room at Brenner Children’s Hospital with a fever. He was soon admitted to the hospital with respiratory, kidney and acute chest issues. When his breathing didn’t improve over two days, he was intubated for nearly a month, which he spent in the pediatric intensive care unit.

His specialists in Winston-Salem worked with colleagues in Charlotte to ensure the best care for Tre. After he was discharged from Brenner Children’s Hospital, he received nearly four months of physical therapy and rehabilitation at Levine Children’s Hospital.

“Levine Children’s was the healing place, the recovery,” says Tunnie Billingsley-Hayes, one of two men Tre calls his “daddies.” Tunnie and his husband, Roger Billingsley-Hayes, knew Tre even before Tre arrived in Mikki’s life.

“Tre has brought all of us together in the most incredible way,” Tunnie says. “Roger and I knew him through his previous foster mom, and Mikki has known my mom for about 13 years.”

Mikki, Tunnie and Roger keep Tre’s life as normal and as active as possible knowing all that Tre faces when a crisis occurs. Following that initial crisis, Mikki says Tre experienced similar events every three to four months. During another crisis in late summer of 2023, Mikki says Tre’s vital signs coded twice. He rebounded with the help of his care team, and Tre received monthly blood transfusions as part of his continuing care to keep his hemoglobin up.

A Phenomenal Team

Tre RobinsonThe crises are not all the same, but many require a similar pattern of care through Levine Children’s that includes an emergency room visit, hospitalization - sometimes in intensive care - and use of morphine and other pain medications. Once Tre recovers, intense physical rehabilitation follows.

“After these crises, we literally start over walking, dressing, bathing and doing those basic things that we just take for granted,” Mikki says. “He comes home in a wheelchair, advances to the walker and then from the walker to moving independently. With anything over a week of hospitalization, everything gets weak because he’s not moving.”

His care requires teams of pediatric specialists in both Winston-Salem and Charlotte.

“The team as a whole is phenomenal,” Mikki says. “Everybody has been so vital in his care and really takes the time to see how Tre is doing.”

While Mikki knows another crisis is inevitable, she says she prays for mild episodes that they can treat with medications at home.

“There are going to be crises,” she says. “I just hope they’re not the one that could be the demise of him. Because it could happen.

“If we didn’t have Brenner Children’s Hospital and Levine Children’s Hospital with their focus and expertise in pediatrics, I don’t think Tre would be here.”

She says Tre has played a big part in that, too.

“He’s a fighter,” Mikki says. “He prays and believes in getting better. That gives me hope because I see the fight in him.”

Brenner Children’s Hospital is now part of Atrium Health Levine Children’s! Everything you know and love about your child’s care is staying the same, now with easy connection to an even greater family of care. Learn more, and see how the best kids' care just got better.