Harlow Whitaker is an energetic, happy four-year-old who loves cats and the children’s show Gabby’s Dollhouse. She loves to paint, too.
“She is always smiling,” said her mom, Brooke Whitaker. “Even when she is going through something.”
When Harlow was just six months old, she began shaking and her eyes twitched. Brooke, a single mom and Destrehan High School graduate, immediately dialed 911.
After a long hospital stay, while monitored on an EEG, Harlow was diagnosed with epilepsy.
Since then, Harlow has endured continued seizures, medically induced comas, surgeries and months-long hospitalizations. At a year old, Harlow underwent surgery to remove a benign tumor in her lungs and excess tissue in her airway. At 18 months old, Harlow was also diagnosed with level 3 autism. She is nonverbal and has complex medical needs, including the use of a feeding tube.
“Epilepsy affects every part of life, not just the seizures themselves,” Brooke said. “I just want to advocate and encourage people to learn more about epilepsy and be that helping hand for families going through it, letting them know you’re there for them.”
Epilepsy is one of the most common neurological conditions, affecting millions of people in the United States and worldwide. According to the Centers for Disease Control and Prevention, about 3.4 million Americans are living with active epilepsy, including both adults and children. Roughly 1 in 26 people in the U.S. will develop the condition at some point in their lives, making it far more widespread than many realize.
Brooke, who works from home as a customer service agent, cares for Harlow full time.
“It’s definitely been a challenge,” Brooke said. “It takes a village.”
Harlow’s care team at Ochsner Health has supported every stage of the journey, Brooke said. Harlow’s neurologist, Dr. Isaac Molinero, her neurosurgeon, Dr. Jerome Volk, and her pediatric complex care doctor, Dr. Allison Cragin, have become like family.
“It’s been four years with them,” Brooke said. “It’s really helpful because when we go there, they know us already. It’s definitely a blessing.”
Brooke and Harlow have also received support from Epilepsy Awareness of America, a nonprofit based in Metairie that supports families after an epilepsy diagnosis. The organization hosts an awareness walk every year in November, which is Epilepsy Awareness Month.
Social media users who follow Harlow’s journey online at the Facebook page, Harlow’s World, have also been a source of support. But the biggest support comes from Brooke’s family, especially her mom and dad.
“They’ve been here since day one,” Brooke said of her parents. “When I first told them I was pregnant, my dad said, ‘We’ve got you.’”
It was not an easy pregnancy for Brooke, who was diagnosed with hyperemesis gravidarum, a severe form of nausea and vomiting during pregnancy much more intense than typical morning sickness. When Brooke was six months pregnant, doctors discovered the tumor in Harlow’s lungs that required close monitoring.
Through all of it, mom and daughter have been side by side: dancing in the kitchen, cooking meals at home, doing each other’s makeup, visiting the park, painting and eating ice cream.
“We go to the aquarium in Gulfport because they have a dolphin exhibit,” Brooke said. “They do dolphin shows that Harlow loves. Anything that keeps us moving around, that’s the best thing to do.”
Brooke is hopeful that Harlow’s vagus nerve stimulation (VNS) surgery, which she underwent last week, will control her seizures and improve her quality of life.
“Right now, we are taking things day by day,” Brooke said. “Some days are harder than others, but we remain hopeful. My biggest hope for the future is that she can experience more comfort, happiness, and as much independence as possible.”
Harlow is a fighter, Brooke said.
“Even with fighting epilepsy, it doesn’t change who she is,” Brooke said. “Harlow is strong, resilient and full of life. Despite everything she faces, she continues to fight every single day, and that’s something truly powerful.”