A Girl With No Quit

Jennifer Holland can still hear the paramedics. “Wake her up, Mom,” they are yelling. “Wake her up!” Waiting for the ambulance to arrive, she sees her daughter Sloan lying on the ground, her small body pricked repeatedly with needles. Jennifer watches but cannot speak.

Sloan, now 12, was in kindergarten or first grade at the time. In the dozens of times Sloan has been hospitalized, the details get mixed up. What stays most vividly in Jennifer’s mind and body are sensory imprints: the sound of her baby’s cries as they struggle to find a vein, the pastor’s face at 3 a.m. when Sloan’s oxygen drops to 7% (normal range is 95–100%), the stunning panic that steals her words each time her daughter begins to shake.  Sloan has had seizures at school, at after-school events, on a softball field, at a trunk-or-treat. She’s been hospitalized during Thanksgiving, Independence Day and countless birthdays. As Sloan has gotten older, the seizures have become less frequent but longer and more dangerous, sometimes leaving her unresponsive for up to an hour and struggling to breathe. The episodes’ increasing familiarity doesn’t make them any less terrifying. When they happen at home, there is only so much rescue medication that can be safely administered before the need to call an ambulance, as too much medication can stop her breathing. “We’d go to the hospital, and it’s this weird thing. I kind of leave my body. I don’t feel, I don’t cry,” says Jennifer. “And then a couple of days later, the adrenaline comes crashing down.”

A Lifelong Journey

Sloan suffered her first seizure cluster at 7 months old, the day before her first Thanksgiving. Jennifer, sleeping in the same room, was awakened by the convulsions. Doctors ran several tests during the week and a half Sloan spent at Arkansas Children’s Hospital (ACH), but were unable to determine the cause. The seizures seemed to go on and on.

“It was like a bomb went off,” Jennifer says. “We stopped counting at a hundred.”

Sloan was sent home on several medications, symptoms under control for the time being. Fourteen months later, the seizures returned. Sloan was admitted to the Pediatric Intensive Care Unit (PICU) at ACH, where genetic testing revealed she had PCDH19 epilepsy, a rare condition affecting mostly females. The PCDH19 gene is responsible for production of a protein that aids in communication between brain cells. With PCDH19 epilepsy, this communication is disrupted or fails completely. Researchers identified the PCDH19 gene as the cause of the condition in 2008, so understanding of the disorder is still limited, and there are no officially approved therapies. An estimated one in 10 girls who experience the onset of seizures before age 5 have the disease. Sloan was Arkansas Children’s first diagnosed patient. “It set in that this was going to be a lifelong journey for her,” says Jennifer. “We had to start making decisions, where we tried to keep the seizures under control as best we could but, at the same time, continue living.”

Lifesaving Support at ACH

ACH is the only level 4 epilepsy center in Arkansas, and “the experience has been lifesaving,” says Jennifer. She’s referring not only to the health system’s clinical and academic excellence but also to its people. In those earliest and most difficult days, the warmth and steadfastness of the team at Arkansas Children’s were anchors. Jennifer is still moved by the kindness of Sloan’s neurologist during their first stay in 2013. And today, she is grateful for Dr. Debopam Samanta’s commitment to learning all he can about Sloan’s condition. “We love Dr. Samanta. We would follow him almost anywhere,” says Jennifer. “He’s always willing to listen to me respectfully, even when I’m being irrational.”

When Sloan was 4, the family moved from Little Rock to Jonesboro. They have visited the ACH Jonesboro Clinic, and the bonds they built while at ACH keep them coming back to Little Rock as well. “Arkansas Children’s has saved my daughter’s life,” Jennifer says. “Any time you’re in the hospital, you don’t want for anything. They give you laundry pods if you need to wash your clothes. If you don’t want to leave, there are places to sleep. They feed you. They try their best to make it a happy, uplifting place for the kids.” “You cannot make this medical condition better — but having a hospital and a support staff in your corner takes some of the pressure off and makes it easier.”

A New Start

After various medications, experimental research and a surgery called vagus nerve stimulation (VNS) when she was in fourth grade, Sloan has been seizure-free for two years in January. Today, Sloan can focus not only on living, but thriving. She loves physical activity, including softball, volleyball, cross-country and track. “Sloan has an excellent work ethic. She’s really, really fierce,” says Jennifer. “She will go and go and go. She has no quit.”

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