Jason Vinson recalls everything about that night: leading his 3-year-old daughter, Kayden, to the bathroom where he prepared a warm bath for her, taking out her ponytail holder and then watching her go limp and collapse from a seizure.
Jason caught Kayden by her ponytail just before she hit her face and jaw against the side of the bathtub. On her worst days, Kayden would have hundreds of seizures daily.
“As I was holding Kayden, I called Jess and told her that I think she needs to have brain surgery,”
Jason said. “I told her, ‘I don’t think we can keep doing this.’”
It was the day that changed everything for the Vinson family. Little did they know it would also be the day that would start their journey as advocates, donors and fundraisers for Le Bonheur Children’s Hospital.
Kayden Vinson was born in April 2010, a healthy 7-pound baby girl. But when she was 8 months old, she began to show signs that something was medically wrong – she began to drop her head forward while sitting up.
The concerned parents immediately took Kayden to her pediatrician who said it was nothing to worry about; she was just tired.
They sought a second opinion at Le Bonheur Children’s, where Kayden spent nearly two weeks in the hospital’s Epilepsy Monitoring Unit. Soon after, they learned Kayden suffered from generalized myoclonic epilepsy and atonic seizures, which caused her to twitch and jerk and her body to go limp.
The news, Jessica and Jason said, was devastating. First came the emotional shock and then came the flood of questions: Will she survive? What kind of life will she have? Will her personality change?
After the diagnosis, Le Bonheur neurologists, led by James Wheless, MD, co-director of Le Bonheur’s Neuroscience Institute, explored various treatment options to help calm Kayden’s seizures, including multiple anti-seizure medications and changing her diet. The seizures also took a significant toll on Kayden’s mental development and caused her to be non-verbal.
Jessica and Jason also were learning how difficult it is to raise a child with epilepsy. They refused to leave their daughter’s side, as they were always terrified a seizure would cause Kayden to fall and injure herself.
“We were always in fear of when the next seizure would come on,” Jessica said. “We constantly had to protect her, and we held her hand everywhere she went.”
On Aug. 2, 2013, a few days after she collapsed in the bathroom, Le Bonheur neurosurgeons performed a corpus callosotomy, a surgical procedure where the brain’s nerve fibers are severed to stop the spread of seizures across the brain’s hemispheres.
The surgery was an immediate success, Jessica and Jason said, and Kayden’s development quickly progressed. She could follow directions, she was able to hold a fork and feed herself and the frequency of her seizures decreased.
Because of the expert care Kayden received at Le Bonheur, the Vinsons’ passion for the hospital grew, and the family wanted to give back. Inspired by their love of soccer, the Vinsons created the River City for Itty Bitties soccer tournament, which is held in conjunction with their 5K fundraiser, Rylee’s Run, named after their first daughter who was born two months premature and died at only 8 days old.
In the past eight years, Rylee’s Run and River City for Itty Bitties has raised more than $140,000. Proceeds are divided between Le Bonheur and the March of Dimes, two charities close to the family’s hearts.
“Raising money and donating is therapeutic, and it’s our way to help kids like Kayden,” Jessica said. “We want to make everyone’s stay at Le Bonheur to be the best experience as possible.”
The Vinsons have directed their personal gifts and those from the events to the Neuroscience Institute.
The funds support programs to further education for physicians, as well as provide resources for children in the hospital’s Epilepsy Monitoring Unit. The family established the Kayden R. Vinson Distinguished Scholar and Lecture Award to bring a leading scholar in pediatric epilepsy to the Mid-South to teach local physicians about epilepsy.
“We couldn’t do the work we do without generous support from people like the Vinsons,” Wheless said. “The donations help start research projects, which have led to new treatment options for epilepsy. Not only does it affect the children here, but our published findings have led to change in children’s treatment around the world. We really use it to support all the missions of the hospital.”
Since Kayden’s surgery in 2013, the 7-year-old is thriving, and the Vinsons remain grateful to the hospital staff who gave their daughter a second chance at life. Kayden’s seizures have dramatically reduced, she’s more independent and she’s able to participate in gymnastics and soccer. Kayden continues to receive expert care at Le Bonheur, and the Vinsons said they look forward to a day when their daughter is seizure free.
“To us, Le Bonheur means hope,” Jessica said. “I truly don’t think Kayden would be where she is now if we didn’t have Le Bonheur in our backyard.”
Rylee’s Run 5K and River City for Itty Bitties soccer tournament
What: In 2016, more than 300 registered for the 5K, and 50 teams played in the soccer tournament.
When: Rylee’s Run is May 19 at 7 p.m. River City for Itty Bitties tournament is May 20-21.
Where: Mike Rose Soccer Complex, 9000 E. Shelby Drive,
Memphis, TN 38125