Demond Thomas Jr. looks like just about any other 8-year-old boy. But “just because he looks well doesn’t mean he is,” his mother, Yolonda Thomas, said.
Demond has sickle cell anemia, a blood disorder that causes him pain for days at a time, keeping him home from school. He was sick all last week but felt better Saturday morning and headed downtown with his family to the Baton Rouge Sickle Cell Anemia Foundation’s annual walk and run.
They’ve been coming since the race’s inception four years ago, Thomas said, bringing along a team of family and friends each year. The event usually draws about 500 people and is just days before September, which is National Sickle Cell Awareness Month.
The annual walk and run organized by the Baton Rouge Sickle Cell Anemia Foundation is a way to raise money to help those afflicted with the disease and to educate the public and raise awareness about sickle cell anemia, organizers said.
Thomas said some of the friends she invited to join the team admitted to not knowing what sickle cell anemia is. When Demond was born and diagnosed with the disease eight years ago, his mom said she too was unsure of what to expect.
Demond had his first crisis — extreme pain that happens when red blood cells die and jam together, leaving too little oxygen in the body — when he was 8 months old.
“That was tough,” Thomas said. “He was a baby. He couldn’t speak to tell me what was wrong. He just cried.”
Even now, Demond’s parents can’t always tell if he’s having a crisis unless he tells them, his father, Demond Thomas Sr. said. A crisis can last anywhere from one day to three weeks, and sometimes he ends up in the hospital.
“Seeing your child go through aches and pain, fever, weeks in the hospital, the sad part about it is there’s nothing you can do about it,” Demond Sr. said. “You give him his medicine and keep him comfortable.”
Through it all, Demond Jr. has managed to stay on the honor roll at Dufrocq Elementary School. When he misses school, his older sister, Reese, brings home his assignments. A tutor helps him keep up with class material.
Although sickle cell “changed us a lot,” Demond Sr. said, “it helped us as a family grow together, stick together, appreciate each other.”
About 6,000 people in Louisiana have sickle cell anemia, out of 100,000 nationwide, said Lorri Burgess, executive director of the Baton Rouge Sickle Cell Anemia Foundation.
“Some people think it’s only an African-American disease,” she said, but all babies are tested for sickle cell soon after being born. Besides frequent pain, the genetic disease can cause strokes, mobility problems and blindness.
Only one medication has been approved to treat the disease, and not all patients can take it, Burgess said. Blood transfusions, which get rid of unhealthy red blood cells, are another treatment option, but too many of those creates a risk of iron overload and organ failure, she said.
In Baton Rouge, “we’re challenged with a population of people who can’t even get state insurance or private insurance” to afford treatment, Burgess said. Sometimes patients go to the emergency room when their pain is unbearable, but even there, sickle cell is often misunderstood, she said.
Patients have told Burgess they’d “rather be chained to a truck and pulled over hot asphalt” than have a crisis.
“The girls at her school say she smiles all the time, but there’s many days she’s crying in pain and she can’t smile,” said Kwane Hookfin, whose 14-year-old daughter Khyedwyn “Khy” Hookfin has sickle cell.
The Hookfins moved to Baton Rouge from New Orleans after Hurricane Katrina in 2005 and started coming to the sickle cell race four years ago. They returned to New Orleans a year ago, but didn’t want to miss Saturday’s race.
“It makes me happy. There’s so many people supporting me,” Khy said.
Khy has a rare form of sickle cell anemia that causes her less pain than most patients, her mother said. But the disease can still make life difficult.
“As soon as you get on track, you think everything is all right, then she gets sick,” Kwane Hookfin said. “I’m self-employed, I’m a hairdresser, so I can’t work” when Khy is sick.
Katrina Spottsville, whose 6-year-old daughter Laila Hayes has sickle cell, said she wished more people understood what patients and their families go through. Although they lead a normal life “as much as we can,” crises like one Laila had earlier this year are scary.
“It is very stressful,” Spottsville said. “You feel helpless because you’re not able to take away that pain from your child.”