Sickle Cell Disease Doesn’t Slow Her Down

Sep 29, 2021 | Patient Stories

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Six-year-old Kyliee requires monthly blood transfusions to treat her sickle cell disease, and her family makes the trip each month from Hammond to receive care at The St. Jude Baton Rouge Affiliate Clinic at Our Lady of the Lake Children’s Health in Baton Rouge. The transfusions reduce her risk of some complications of the disease, including stroke, and reduce symptoms of severe anemia.

Normal red blood cells are shaped like discs, giving them flexibility to travel through even the smallest blood vessels. With sickle cell disease, those red blood cells have an abnormal crescent shape like a sickle, which makes them sticky, rigid and prone to getting trapped in small blood vessels, blocking blood from reaching some parts of the body. This can cause pain and tissue damage.

Kyliee’s parents, KeOsha and Greg, have known about Kyliee’s condition since she was a newborn, and the monthly blood transfusions started just before Kyliee turned four. The constant sticks and pricks in addition to all the regular bloodwork she requires led Kyliee’s medical team to recommend a mediport.

“We explored that option, and it was scary for us to insert a piece of metal inside her chest,” says KeOsha. The family prayed and made the decision to get the port, which has made the transfusions much easier and reduced the pain for Kyliee. The port gave her a small scar, which her family calls her “princess scar.”

Having a St. Jude Affiliate Clinic so close to home, was transformative for Kyliee’s care.

“Ever since she got the port it’s been less stressful, a smooth ride,” KeOsha says. “You hate for your child to go through this, but she wakes up just like any other child. It doesn’t affect anything she does.”

Kyliee doesn’t mind her medical visits. “Believe it or not, she looks forward to going to the doctor every single visit,” KeOsha says. “That’s just the care and the love from Our Lady of the Lake Children’s Hospital. They have been phenomenal. Anything we need, they are on top of it.”

KeOsha has high praise for the entire Children’s Health team, from doctors and nurses to Child Life specialists. “They treat those children like they’re golden. I can’t say enough about them.”

September is National Sickle Cell Awareness Month, and Kyliee’s family does everything they can to raise awareness and help others like her. Each year the family hosts a blood drive, which sheds light on the disease and helps save others.

“Every day we’re learning something new about sickle cell,” KeOsha says. “Sometimes you feel like you’re alone, that no one knows about the disease, it’s swept under the rug or kept on the backburner, but we are pushing forward.”

About 100,000 people in the U.S. have sickle cell disease. KeOsha and Greg are both carriers of the sickle cell trait, which they didn’t know before Kyliee was born. Kyliee’s younger brother, Dallas, had a 50% chance of having the condition too, but he only has the trait so does not need treatments like Kyliee.

Kyliee is a first grader and is able to attend school in person. She loves Story Bots on Netflix and stays very active. She loves to skate and going to playgrounds and trampoline parks with her dad. Her favorite colors are pink and purple, and she loves dressing up like a princess.

As one of only eight St. Jude Affiliate Clinics in the U.S., Our Lady of the Lake Children’s Health extends the cutting-edge power and compassionate care of the world-renowned St. Jude Children’s Research Hospital to the people of Louisiana and beyond. Learn more here.

 

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