‘She Takes It and Keeps On Moving.’ Child Battles Four Major Diagnoses and Two Surgeries in 5 years
Patient at Cook Children’s has Sickle Cell Disease, a Stroke, Moyamoya and Bow Hunter Syndrome
For most of her young life, Jakera Leggett showed no visible signs of the sickle cell disease she was diagnosed with during a routine birth screening. But that all changed suddenly two weeks shy of her fifth birthday.
Jakera wasn’t in pain but her mom, Tiffany Ferguson, noticed her little girl had lost range of motion on her right side.
“She couldn’t open her hands, she couldn’t lift her arms. I immediately called her doctor and told her that Jakera couldn’t move anything on right side. She told me it sounded like a stroke and to call 911,” Tiffany said.
An ambulance rushed Jakera to Cook Children’s where she was treated for a stroke and diagnosed with moyamoya, a more serious disorder that developed from her sickle cell disease. Moyamoya can occur when sickled red blood cells cause repeated damage to the blood vessels in the brain. The blood vessels begin to tangle and create a “puff of smoke” appearance on an MRI.
Moyamoya can lead to more stroke activity and typically requires surgical intervention to improve blood flow around damaged blood vessels. Jakera’s medical team decided to intervene before another stroke could occur.
Jakera had revascularization surgery in February 2019, a procedure where surgeons flipped the protective covering on top of the brain (the dura) to encourage the main artery there, the middle meningeal artery, to create new collateral arteries into the brain.
Following the surgery, Jakera now receives blood transfusions every four to six weeks.
Along with interventions such as blood transfusions, sickle cell disease is also managed by medications and potentially a stem cell transplant for long term success against the disease. But finding a donor can be seemingly never ending. Physicians will look to find a match from siblings and family first before trying to find an unrelated donor, according to Cook Children’s physician Clarissa Johnson, M.D. Jakera has not yet had a stem cell transplant, but her family remains hopeful she’ll find her match.
“A stem cell transplant is a cure for sickle cell disease because you’re basically putting new stem cells in the body,” Dr. Johnson said. “Red blood cells are made from stem cells so if you put new stem cells in the body that don’t contain Hemoglobin S, you are creating a situation where you no longer have stem cells that make sickle cells.”
With sickle cell, stroke and moyamoya, Jakera has endured her share of hardships, but it wasn’t until she was diagnosed with Bow hunter’s Syndrome that she was affected by just the turn of the head.
“She started blacking out three to four times a day. It happens [when she turns] like a bow and arrow hunter when they have to turn their head to the side to aim,” Tiffany said. “She was born right handed but when she turns her body to the right, it cuts off the circulation to her brain so she actually switched hand dominance to the left.”
Jakera had a spinal fuse from the back of her neck down to her shoulders to limit the amount she can physically turn. She can no longer turn more than 90 degrees to ensure there is enough blood reaching her brain. While this is not a cure, her physicians believe it will relieve the loss of consciousness.
Jakera is not the only one in her family impacted by sickle cell disease. Her father also faces medical difficulties.
“There were days where I was running from Cook Children’s to Harris and back to Cook Children’s so that I could be with both of them during their crises,” Tiffany said. “Everyone in the family is learning to deal with it because we know it isn’t going to go anywhere right now, but they understand the most important thing is making sure they [Jakera and her father] are OK.”
Four major diagnoses and two surgeries in five years could seem daunting to most, but Jakera has flown through it all with ease, and has even made the local cheerleading squad.
“She’s like a little woman,” Tiffany said. “She takes it and keeps on moving. The stroke limited her a lot but the squad has been so good to her. She always pushes through.”
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Get to know Clarissa Johnson, M.D.
At the core of Dr. Johnson's passion for medicine and pediatrics is her desire to be an advocate for those who don't have a voice for themselves. Her initial interest was to be a research scientist, but her realization that face-to-face interaction with patients and their families might make a more direct difference in people's lives led her to pediatrics, and eventually to pediatric hematology and oncology.
Dr. Johnson talks about advanced treatments and therapies as well as promising new clinical research on the horizon for sickle cell disease. Her extensive knowledge and passion for treating patients with sickle cell disease is the driving force behind bringing relief to hundreds of patients at Cook Children’s.