The 71st Annual KDKA-TV Free Care Fund Telethon will be held this Thursday, showcasing local children and families who are alive and thriving today thanks to UPMC Children's Hospital of Pittsburgh.
PITTSBURGH (KDKA) — A 3-year-old boy was cured today thanks to special treatment he received at UPMC Children's Hospital in Pittsburgh.
Leon Johnson underwent a bone marrow transplant on May 16, 2024, after being diagnosed with sickle cell anemia one week after he was born.
His mother Stacey gave birth to twins in 2021. Leon and his sister Leemarie were born just two minutes apart.
“I knew I had sickle cell trait, but their father didn't realize he had the trait. Now they're giving birth to all their children. “We did a newborn test on him and found out he had sickle cell disease,” Stacey said. . “He was still in the NICU. So one of his first appointments after he was released from the NICU was to go to the hematology clinic to get his medication and learn what sickle cell disease is and how sickle cell is.” The cells he had were SS, the most severe (version) of sickle cell they told us. ”
Before Leon's bone marrow transplant, Stacy said he was doing things most 3-year-olds do: playing outside, going to the park, going trick-or-treating and spending quality time with his little sister. He said he couldn't do the same thing.
“We had to isolate him as much as possible to keep him from getting sick. [are] Specific instances and situations that can cause a sickle cell crisis or a pain crisis, and how it changes from warm to frigid conditions. For example, you can't play outside in the cold when it's hot without taking a break to hydrate. It’s humid and hot outside and the seasons have changed,” Stacey said. “We always had to coordinate with hospitals when we traveled. [could] Please connect him to the hospital we will go to in case he is in crisis. ”
Leon had to undergo regular tests, go to the hospital, and take medication every day.
“Sickle cells affect the blood, making it sickle-shaped, but there's more to it than that. Because the blood isn't developed the same way as in a normal person, it affects the amount of oxygen carried around the body. '' Stacey said. “It causes a lot of problems and it affects all your organs. It affects everything, to be honest.”
Leon's family received the good news about six months ago that he might be eligible for a bone marrow transplant.
“About a month later, after blood tests and other tests, we found out that he was officially cured of sickle cell. And after three months of detailed tests, there was no sickle cell,” his mother said.
Stacey said Leon is experiencing what he calls “Leon's first.”
“He was able to go back to school, he was able to go back to a normal life. He was able to go outside and go trick-or-treating for the first time, he was able to play in cold water for the first time, he was able to go out in the rain for the first time. I was able to play inside,” Stacey said.
His mother told KDKA-TV that Leon is now full of energy.
“He's a different kid. His energy is gone from the laid-back, calm person I thought he was.” [child]. “No, he was actually in pain and affected by sickle cell,” Stacey said, “and he didn't go outside and play or go in the dirt. I really enjoy doing that.”
Stacey said she is looking forward to spending the holidays with her family this year.
“[Before the bone marrow transplant]any type of family function, if someone was sick, we wouldn't come,” Stacey said.
She also said she was excited for Leon and Lee-Marie to spend more time together.
“She's his partner in crime. She came to the hospital when he was in the hospital, they hung out together, and then she left. It was hard for them to be apart for that long. “,” Stacey said.
She credited UPMC Children's for always taking care of her.
“It was amazing from the beginning. The health care providers, doctors and nurses were very accessible,” Stacey said. “I had a great experience with all the staff there.”
You can help kids like Leon this Thursday. 71st KDKA-TV Free Care Fund Telethon. UPMC Children's Hospital of Pittsburgh's free medical care fund ensures that no child is left without medical care.
contributed to this report.
Erica Stanish
