Sickle cell disease is challenging but not insurmountable for son of Lakeland commissioner

Lakeland’s Christian Walker has reached a milestone in his 20-year battle with sickle cell disease, an group of inherited red blood cell disorders.

After a blood transfusion this month, he won’t need to keep having transfusions every several weeks.

Ongoing transfusions have been part of the McKeel Academy of Technology graduate’s life since he was a pre-teenager. 

Not needing them routinely will be a relief as he juggles studying at Galen College of Nursing in St. Petersburg with working at a Publix store there.

His improvement results from having had transfusions, a change in his medicine, healthy behaviors and determination, mixed with family prayer, to keep the genetic disorder from excessively controlling his life.

“I was regularly challenged by dealing with sickle cell in daily life,” he said. 

“But I was blessed by not having major problems.”

Christian now is on a drug called hydroxyurea to reduce his need for transfusions and prevent painful crises that can damage organs.

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All part of his transition from being treated by the sickle cell team of Johns Hopkins All Children’s Hospital to being with an adult medicine doctor who treats sickle cell patients.

His history of having a silent stroke as a child and other factors specific to his condition led doctors to keep him on blood transfusions until now.

“He’s an excellent patient and has been outstanding in his follow up and adherence,” said Dr. E. Leila Jerome Clay, director of the hospital’s comprehensive sickle-cell program. “He would really be a role model for someone to have.”

Sickle cell symptoms began affecting him as an infant.

His parents, Phillip and Cappie Walker, said the silent stroke occurred sometime in his first years of life. It showed up when routine brain scans started being taken but, fortunately, hadn’t caused any damage.

“We learned a lot during our early years,” said Phillip Walker, a Lakeland city commissioner. “You have to research.”

One of the most important things they learned was Christian’s recurrent risk of going into a sickle cell crisis.

The abnormally shaped red blood cells are in a crescent or sickle shape. That interferes with blood flow and getting oxygen throughout the body.

Anemia and severe chronic inflammation are other dangers of sickle cell disease, which is more common in African Americans, Hispanic-Americans from Central and South America, and people of Middle Eastern, Indian or Mediterranean descent.

About 9,000 Florida residents and about 100,000 nationwide live with it, Clay said.

Christian doesn’t have the most common, severe type, Hbss or sickle-cell anemia, that occurs when a child inherits a sickle cell gene from each parent.

His is a variant called HbS beta thalassemia zero, which means he got a sickle cell gene from one parent and a gene for beta thalassemia (causing anemia) from the other.  Beta thalassemia reduces his body’s production of hemoglobin, the protein in red blood cells that spreads oxygen through the body.

So he hasn’t been spared the crises that make sickle cell disease painful and dangerous.

His parents didn’t want him in pain, but they didn’t want him overmedicated. If pain appeared manageable, they preferred treating it first with less-intense drugs and managing the crisis at home.

Preventing a crisis from happening, of course, was even better.

They learned how important it is for him to stay hydrated.

“Sickle cells, if there’s not enough fluid, they will attach to each other, bunch up and cause the pain crisis,” Cappie Walker said.

They watched for signs of a crisis pending, such as his lips becoming white.

He’s been hospitalized with medical issues an average of a couple of times a year, although less frequently as he got older.

“At a young age, it makes you attentive to everything,” Christian said.

As a little boy, he enjoyed playing basketball at Simpson Park Community Center in Lakeland.

Once regular transfusions began at age 9 or 10, and a port was put in to make those easier, he needed a non-contact sport.

“We put him into golf,” Phillip Walker said. “He didn’t like that, of course.”

“I wouldn’t say it like that,” Christian said, noting that he played golf while at McKeel.

“Other than sickle cell, he was usually a healthy child,” Cappie Walker said. “It’s been a blessing.”

Initially, he went to Lakeland Regional Medical Center for transfusions but later got them at All Children’s outpatient clinic in Tampa. They started taking him straight to All Children’s Hospital in St. Petersburg, if a crisis occurred, for continuity in his care instead of first getting stabilized at LRMC.

Lakeland Regional’s pediatric emergency department, opened in 2018, now sees “quite a few” sickle cell patients. The “vast majority” can be admitted to LRMC if they need care beyond the emergency department, said Dr. Donna Bhisitkul, medical director of the Children’s Emergency Department.

The addition this year of a pediatric intensive care unit, including a pediatric intensivist, “will increase our capabilities of caring for these children,” she said.

Someday Christian may end up treating patients at LRMC himself. He plans to start his health-care career with a two-year nursing degree, then a four-year degree and perhaps continue to become a nurse anesthetist.

 He left McKeel in 2018  with a 3.7 grade point average and having earned EKG certification.

His maternal grandparents drew him toward nursing.

William Dennis Cook was a surgical assistant at Duke University initially and then at Watson Clinic and Lakeland. Cappie Christine Cooke was a nurse at Duke and then at LRMC, he said.

“I think it was mainly because of my grandfather,” Christian said. “He’d get me from school and everything. He used to pick me up and bring me to their house.”

Robin Williams Adams can be reached at robinwadams99@yahoo.com