Swingin’ for Mila: Golf tournament raises funds for 1-year-old who has battled seizures
Published 8:47 am Saturday, August 12, 2023
DESTREHAN — Gulf Coast Safety Council is dedicating all proceeds from its 21st annual Swingin’ for Safety Golf tournament to a local 1-year old who has battled infantile spasms and focal seizures.
The gold tournament will take place on Friday, October 6 at Cypress Lakes Country Club in Destrehan.
Mila Spunizo was only 4 months old when she was diagnosed with infantile spams in March 2022. Madicyn Dempster called her mother for advice after noticing her infant daughter was making unusual arm movements. Her mother messaged some of her nurse friends, who urged them to rush Mila to the emergency room.
At the ER, Mila underwent an EEG that revealed she was experiencing multiple infantile spasms, a type of seizure, within 30 minutes of each other. Her family stayed in the hospital while awaiting clearance to administer ACTHAR, a heavy steroid that required injections twice a day.
Dempster gave Mila’s doctors permission to fight on her behalf when insurance initially did not want to cover the $30,000 medication that was crucial to saving her from experiencing up to 100 spasms a day.
Three days after being on the steroid injections, Mila was released from the hospital. The spasms began to fade after two weeks, and her family continued to administer shots to slowly wean her off of the medication. Mila was seizure free for about two weeks before the spasms returned with a vengeance. Somewhere along the way, Mila also began experiencing focal seizures, leading to an epilepsy diagnosis on top of the infantile spasms. She was placed on another anti-seizure medication called Keppra.
At one point, her family feared for her life after genetic testing uncovered two mutations. However, doctors determined the genetic mutations had no link to the health challenges Mila was experiencing and found no cause for her seizures.
Dempster said it was also heart wrenching seeing Mila adapt to life on steroids.
“She went from being this normal baby to being incredibly huge and so swollen that she could barely move. She was rolling over, and then she could not roll anymore. It was painful to watch,” Dempster said. “She constantly wanted to eat while she was on the steroids, and she was always mad. We almost lost her for a while because she wasn’t the same Mila when she was on the heavy steroids. We treasured every single smile we would get.”
At the same time, Mila astounded her family with the resilience she displayed through the entire journey. She took daily injections in stride, sometimes flashing a smile at her parents in the middle of a shot.
Mila came off of Keppra about two months ago, and her personality has been blossoming ever since.
Now three months shy of her second birthday, Mila has been in remission for about a year. While she has remained mostly seizure free, her health journey is not over. An EEG in March 2023 showed the seizures have caused some slowing/ cerebral dysfunction in the lower right portion of her brain, which has a major role in communication and language development.
As of now, Mila is nonverbal and is undergoing early intervention therapy.
“She is definitely delayed in speech. Physically, she’s doing great,” Dempster said. “We don’t know if the slowing in her brain is permanent. We have another EEG in September, and we are hoping to get clear answers so we can find out where to go from here to support her and give her everything she needs to function and live a normal life.”
Mila’s health journey has taken a serious mental toll on her loved ones. When approached with the opportunity to have this year’s Swingin’ for Safety golf tournament hosted in honor of Mila, Dempster was initially hesitant.
“I took a week to think about it, and I realized she deserves to have her story shared,” Dempster said. “People should know how resilient she is. It’s inspirational as a mom to see her go through all of that and still be able to push forward.”
According to Gulf Coast Safety Council, the annual Swingin’ for Safety fundraiser is a day of fun competition and shared commitment to a worthy cause.
Director of Operations Dixi Dufrene said GCSC’s Annual Golf Tournament originally emerged as a platform for networking, collaboration and camaraderie.
“In 2011, we shifted our focus: to rally together in support of a local recipient in need. We selected Mila as this year’s beneficiary to shed light on the struggles of her condition, raising both awareness and funds. With every contribution, every participant, we collectively step forward to help alleviate the financial burden while uplifting the spirts of both Mila and her family,” Dufrene said.
Team fees range from $200 for individual players to $675 for a four-man team with hole sponsor and mulligans. Several other sponsorships are available. Proceeds support Mila’s continued healthcare.
For more information or to register, visit www.mygcsc.com or call 504-469-7787.