PORTAGEVILLE — Twice-a-week physical therapy sessions and monthly blood transfusions have become a way of life for 12-year-old Caleb Booker of Portageville.
The Portageville Middle School student, who is the son of Roy and DeLois Booker, was diagnosed at birth with sickle cell disease, a painful and debilitating blood disorder that primarily affects the black population.
“With sickle cell, mom and dad are both a carrier of the gene and have a one- in-four chance of having a child with sickle cell disease,” DeLois Booker said. In a person who has sickle cell, the red blood cells that carry oxygen flatten out, or take the shape of a sickle, which is how the disease received its name, Booker explained.
“Because the cells flatten out, the oxygen isn’t there,” Booker said.
Those who have sickle cell disease can have painful crises throughout their lives, such as pain in their joints and stomach or severe muscle cramps, Booker said.
The effects from the disease vary from person to person. Aside from a bone marrow transplant, there is no known cure for sickle cell disease.
Fortunately, Caleb has had only a couple painful crises in his 12 years, his mother said. His spleen has been removed, and he’s been flown twice by helicopter to a St. Louis hospital.
“Since then, we’ve done well. We know other kids with sickle cell who’ve had it much worse, and we’ve been so blessed,” Booker said.
But recently, Caleb and his family learned he was having strokes.
“We didn’t know for at least a year (he was having strokes) until we noticed he began to walk differently,” Booker said. “And it’s gotten worse.”
Last September, Caleb started receiving blood transfusions every three or four weeks at St. Jude Children’s Research Hospital in Memphis, Tenn., where he receives about a pint of blood each time. The transfusions help to prevent strokes from occurring.
“It hurts to receive blood transfusions, but it’s all right to go down there,” Caleb said.
The transfusions immediately give Caleb more energy, his mother said. “Within hours of receiving a transfusion, he’s more energized and there’s no negative side effects,” she said.
Caleb’s daily routine consists of taking penicillin, folic acid and a multivitamin to prevent any life-threatening infections. Since learning of his strokes, Caleb also receives both physical and occupational therapy on a weekly basis.
“We’re a miracle. We don’t take life for granted. It’s a gift,” said Booker, who is an art teacher for first through sixth grades in the Portageville School District.
Sickle cell disease affects thousands of Missourians every year, but regular medical care can significantly improve the lives of those with the disease. But it’s the faith of Caleb’s family, the support from his community and the kindness of strangers who donate blood that keep the youngster and his family in positive spirits, his mother said.
For example, since January Caleb’s schoolmates at Portageville Middle School have raised funds as “Caleb’s Crusaders.” On Feb. 23 the school hosted a mini-American Cancer Society Relay For Life, raising $10,000.
Although Caleb doesn’t have cancer, the school began raising funds for the organization in Caleb’s honor, said Judy Scherer, principal at Portageville Middle School.
With Caleb’s permission, Scherer conducted an assembly to discuss Caleb’s sickle cell disease and raising money with students.
Fundraising efforts varied from paying 50 cents to chew gum in class to conducting bake sales. The fundraising was a great learning experience about finances, compassion and cooperation for the students, Scherer said.
“I have never been so proud of a group of 215 kids in my life. I thought we’d raise $2,000 or $3,000 and we took in over $10,000,” Scherer said.
But the school isn’t finished. A fundraiser dance is set for April 20 and the school is still raising money in Caleb’s honor for the New Madrid County Relay For Life, which will be June 22-23.
“He is our inspiration. He is why we’re doing this. We want to help out in every way we can,” Scherer said about Caleb.
Scherer described Caleb as shy but said he opens up to people he knows. “He has a lot of endurance and when he walks down the hall, it takes a lot of effort,” Scherer said. “He’s upbeat and positive, which he is naturally, but one reason is because of his parents and their faith and the faith they passed on to Caleb and his (two older) brothers.”
In his spare time, Caleb said he likes to play Nintendo and watch TV. He does like to play baseball and his favorite subjects are physical education and language.
“How do you say thank you to so many people who care? Caleb is such a blessing. It’s great we’re able to see how caring people can be,” Booker said. Booker also encouraged individuals to consider donating blood because if not for donors, so many people’s lives would not be the same today.
She added: “You just don’t know until you’ve been through something (like this) truly how important it is to accept help and give help.”
