Leon, 3, is now full of energy after bone marrow transplant due to sickle cell disease | 2024 Free Care Fund
The 71st Annual KDKA-TV Free Care Fund Telethon is this Thursday and all week, we're introducing you to some of the local children and families who are alive and thriving today thanks to UPMC Children's Hospital of Pittsburgh.
PITTSBURGH (KDKA) -- A three-year-old boy is cured today thanks to the special care he received at UPMC Children's Hospital of Pittsburgh.
Leon Johnson received a bone marrow transplant on May 16, 2024, after being diagnosed with sickle cell disease one week after being born.
His mother, Stacy, delivered twins in 2021. Leon and his sister, Leigh-Marie, were born just two minutes apart.
"I was aware that I had this sickle cell trait, but their father was not aware that he had the trait. They do the newborn screenings now for all children, and that's how we found out that he had sickle cell disease," Stacy said. "He was in the NICU still. So, after he got released from the NICU, one of his first appointments was to go to hematology and to be put on medication and to start getting educated on what sickle cell disease is, what version of sickle cell he had, which was, SS, the most severe (version) for what they told us of sickle cell."
Stacy said before Leon's bone marrow transplant, he couldn't do the same things most three-year-olds do, like playing outside, visiting the park, trick-or-treating, and spending quality time with his sister.
"We had to try to isolate him as much as possible to keep him from getting sick. There [are] certain instances or situations that can trigger a sickle cell crisis or a pain crisis, and that is changing from warm to extreme cold, like you can't do the cold playing outside, when it's hot without taking breaks to get fluids, if it's too humid outside, too hot, the season's changing," Stacy said. "When we traveled, we always had to coordinate with the hospital so that they [could] get us connected to the hospital where we were going just in case he had a crisis."
Leon had constant tests, hospital visits, and medication to take daily.
"Sickle cell impacts your blood, and it's sickling, but not just that. It impacts how much oxygen is carried through your body because your blood is not really developing the same way as normal people," Stacy said. "It causes a lot of issues and impacts all of your organs. It impacts everything, quite honestly."
Leon's family got the good news about six months ago that Leon could get a bone marrow transplant.
"We found out about a month after blood work and such, that he's officially cured of sickle cell, and after he got his three-month workup again, no sickle cell," his mother said.
Stacy said Leon is experiencing what they call "Leon's firsts."
"He's able to go back to school, get back to normal things. His first time being able to go outside to trick or treat, his first time being able to play in cold water, his first time being able to play in the rain," Stacy said.
His mother tells KDKA-TV that Leon is full of energy now.
"He's a different kid. His energy has gone from I thought he was my laid back, chill [child]. No, he was actually kind of, like in pain, and his sickle cell impacted him," Stacy said. "He really enjoys like, going outside and playing and going in the dirt and all those things."
Stacy said she's looking forward to the holidays and spending them with family this year.
"(Before the bone marrow transplant), any type of family functions, if somebody's sick, we're not coming," Stacy said.
She said she's also excited to allow Leon and Leigh-Marie to spend more time together.
"She is his partner in crime. She would come to the hospital when he was in the hospital to play with them and then leave. That was hard for them to be separated for that much time," Stacy said.
She said she owes it to UPMC Children's for their constant care through it all.
"Phenomenal from the very beginning. Extremely accessible as far as their providers, the doctors, the nurses," Stacy said. "I've had an incredible experience with the entire staff there."
You can help children like Leon this Thursday during the 71st Annual KDKA-TV Free Care Fund Telethon. The Free Care Fund at UPMC Children's Hospital of Pittsburgh ensures no child is ever denied medical care.
