Beckett was featured on NBC’s “6 in the Mix," watch it here!
In his short 12 years of life, Beckett Oleson of Tampa has been a healthy, growing boy who enjoys building with Lego sets and performing in musical theater. His life changed abruptly in 2019, when he started to have seizures.
“We noticed that he started having episodes and movements. I will never forget it was the day before Halloween, a day that is supposed to be so fun for a young boy,” says his mom Kacy.
The seizures came on suddenly and quickly. Within two weeks, Beckett had been diagnosed with bilateral epilepsy, a condition in which the right and left sides of his brain experience seizures independently of eachother.
The Oleson family started seeing local doctors for answers and Beckett was placed on medications that would work for a few weeks, until they didn't. He was experiencing multiple seizures a day and his health was declining.
Doctors in Tampa acknowledged that Beckett's epilepsy was rare and complex. They referred the Olesons to Nicklaus Children's Hospital's Brain Institute in Miami and its dedicated Comprehensive Epilepsy Center. Through the center, a team of multidisciplinary specialists, all experts in epilepsy, meet weekly to discuss cases such as Beckett's, and find viable treatment options and solutions.
“We drive 4 ½ hours to Miami and back to Tampa each time we visit the doctors there, says Kacy, but it is worth it," says Kacy.
“Our number one goal with all of our patients, including Beckett, is to find the best possible treatment modality for each individual child to reduce the frequency of the seizures and give him optimal quality of life," says Marytery Fajardo, Pediatric Neurologist at Nicklaus Children's.
Becket underwent surgery to place a Responsive Neurostimulator Device (RNS) in his brain. The RNS device monitors Beckett's brain waves, detects seizure activity and sends pulses of stimulation to help brainwaves return to normal.
“The device coupled with medication has helped Beckett manage his seizures. He went from having multiple a day to one a week,” says Dr. Fajardo.
The treatment has given him the confidence to get back into a routine.
“He is back in school, attending 7th grade and getting straight As. He has even started acting in plays again, something he loves so much,” says Kacy. “We are thankful to the team at Nicklaus Children's for allowing him to continue to live his life while helping us find solutions so he can do as many of the things he loves,” she said.
Beckett will require lifelong monitoring as well as adjustments to his medications as he grows, but thanks to ongoing research and advances in healthcare, his medical team continues to seek solutions to help him life comfortably and confidently.
“We don't give up hope. We know that every child's journey with epilepsy is going to be different, but with patience and seeking the best help you can find you can get to a point where your child can life the best life possible,” says Kacy.
