Hazel Wells’ energy is infectious.
Whether she’s playing board games in the living room with her family or stacking Magna-Tiles in her room with her older sister, Charlotte, Hazel’s enthusiasm fills the Wells’ home with joy.
“I would say Hazel is this charismatic, incredibly happy, funny child that’s really present,” said Hazel’s dad, Taylor Wells.
“She’s her own person, and she really embodies just this beautiful, bright light,” said Hazel’s stepmom, Jen Wells.
Hazel, 9, has lived most of her life with a rare genetic disorder, PCDH19-epilepsy, a condition characterized primarily by seizures with other symptoms including cognitive and developmental delays. Hazel was diagnosed when she was 6 months old. About a year after the diagnosis, the seizures began to increase in severity and frequency.
For the next year, Hazel went to OHSU Doernbecher Children’s Hospital about once a month, where she would stay for up to 10 days at a time while providers tried to get her seizures under control.
“The team at Doernbecher was amazing. When Hazel would go into the ICU, I knew that she was being taken care of by these incredible staff, incredible nurses,” Taylor Wells said.” They made a very tragic experience into something tolerable and welcoming and loving.”
The OHSU Comprehensive Epilepsy Center is the only Level 4 epilepsy center in the state of Oregon, which denotes its status as having all the staffing, technology and resources to diagnose and treat the most severe epilepsy-related conditions. Hazel’s care team within the Doernbecher Childhood Epilepsy Program was able to implant a vagus nerve stimulation device, which sends electrical impulses into the brain, to modulate brain activity and help suppress seizures before they start.
Thanks to the vagus nerve stimulation and medication, Hazel has been mostly seizure free for the last three years.
“Her ability to stand in the face of adversity, continue to fight and probably live to the fullest more than us is just so incredible,” Jen Wells said. “She’s just really, really special.”
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