Six-year-old battling sickle cell

Six-year-old Lenardo Clarke should be worrying about spelling tests, choosing which cartoon to watch, or simply enjoying his childhood.

Instead, much of his young life is marked by hospital visits, blood tests, and the quiet bravery required to live with sickle cell disease. According to his mother, 28-year-old Shaday Harrison, the signs first appeared long before a diagnosis.

"People were saying it's bad jaundice. I see his eyes starting to get yellow and I was wondering why. I didn't think a four-year-old would have bad jaundice. I found out his white blood cell is more than the red blood cell and it has been rough since," she said.

Sickle cell disease is a genetic blood disorder that affects the shape of red blood cells, restricting oxygen flow and leading to frequent pain, fatigue, and serious complications. Diagnosed at age four, Lenardo's daily experiences differ greatly from those of most children his age. The illness cast a shadow over what should have been a joyful Christmas. Harrison recalled that on Christmas Day, Lenardo had a very high fever.

"His eyes were very, very yellow, the same for his hands and his feet. When I saw him feeling weak, I took him to the hospital," she said. Harrison rushed her son to the Bustamante Hospital for Children, where doctors did some tests.

"They told me his liver was swollen and his blood count was 4.4, and that he would need blood," she said.

Lenardo remained hospitalised for more than a week and was discharged last Saturday, after doctors reported improvement in his condition.

"They were still working on his blood count, which was at 7.1, so they discharged him, but said he would need regular check-ups," Harrison explained. She said Lenardo is scheduled to receive another blood transfusion in February. Doctors also informed Harrison that Lenardo would also be treated for malaria, a stark reminder of how vulnerable he is. To reduce the risk of infection, Harrison said she was forced to pause the hair services she once provided from her home.

"It's very rough because the doctors say because he has the sickle cell, I can't bring certain and certain person at the home, because if they have a flu, it will be quicker for him to pick up that flu."

She has since turned to poultry farming, a choice that allows her to remain close to her son, though it comes with its own challenges.

"You know when you doing farming, inspectors have to come and check the place. So now I stay home and raise chicken and plant crops," she said. Harrison also told THE STAR that Lenardo has to be schooled differently.

"He was going to one [school where] he caught dengue and then the next [school] the students were in the rain and he caught pneumonia. So the doctors told me it's best to homeschool, so my mom get a teacher who lives nearby, so he goes there," she said.

Lenardo's grandmother, Lueneth Menzie, told THE STAR that she does her best to provide support despite ongoing financial strain.

"If I wasn't here, Shaday would go mad already because it's hard and I know, even right now I am broke. But because of the type of child he his, you just have to visit him every day."

Daily trips from Linstead, St Catherine, to the Bustamante Hospital cost approximately $3,000 per day for one person. However, some of the burden has been eased through the National Health Fund card, which the family uses to access medication. Harrison said Lenardo still needs blood which can be donated at any blood collection entity. The family is also seeking a pressure machine as they have to monitor him constantly.

Harrison recalled one of her most frightening experiences in 2023, when Lenardo suddenly was unable to walk.

"His heart rate go zero and them have to pump him chest. On the third time his heart rate go 97, when he passed his urine, the colour look like Pepsi," she recalled. She said living in constant fear is difficult, but her son's strength keeps her going.

"If you look at him you wouldn't think he has sickle cell. He's jovial, he plays, he jumps, you really wouldn't know. But sometimes you look at his eyes you can tell."

Harrison said she once cried frequently, until a moment during one of Lenardo's hospital stays changed her perspective.

"He wiped my tears and told me 'Mommy, don't cry. God is going to heal me'. So from him tell me that it is easier."

Persons wishing to assist Lenardo Clarke, may contact his mother Shaday Harrison at 876-442-4228.