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Photos by Erin Nelson.
Prime and Leah Deason hold a framed photograph of their late son, Ozzie, in the living room of their home Oct. 13. Photos by Erin Nelson.
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Photos by Erin Nelson.
A set of stacked purple pumpkins, for epilepsy awareness, are displayed in a rocking chair at Prime and Leah Deason’s home.
Prime and Leah Deason took their 3-year-old son, Ozzie, to the beach in April of this year, but it wasn’t your typical beach trip.
Since before he was born, Ozzie had battled an ultra-rare genetic mutation that affected his brain development, causing epilepsy, hydrocephalus (water on the brain), cerebral palsy, neuromuscular scoliosis and hypotonia (affecting his muscles and daily functions such as swallowing). He had multiple seizures every day, couldn’t talk and had very limited motor skills, his parents said.
Ozzie had never been to the beach before, and despite three years of trying every medication doctors could imagine, his body was shutting down, and he was dying.
His parents, who live in Hoover’s Lake Cyrus community, decided they wanted him to experience putting his feet in the ocean and in the sand on the beach. It was a moment they will never forget. Ozzie died two weeks later.
Now, the Deasons hope to help preserve the memory of Ozzie and help other families dealing with epilepsy. They once again have formed a team called Ozzie’s Warriors to participate in the fourth annual Walk to End Epilepsy on Nov. 6 at Railroad Park in Birmingham. They’re hoping their team can raise $7,500 for the Epilepsy Foundation Alabama group.
“The ultimate goal is to hopefully find a cure and not have children experience this horrible disease that many people don’t realize can take a life,” Leah Deason said. “Four hundred and seventy thousand children in the U.S. have epilepsy. That’s a lot of kids.”
Short life, long battle
The Deasons knew Ozzie had a problem before he was born. At 20 weeks in gestation, an anatomy scan detected his enlarged brain, and doctors planned to take him out of the womb early at 34 weeks, but he came even earlier than that at 28 weeks on the last day of 2017.
Ozzie spent the first 93 days of his life in the neonatal intensive care unit at Children’s of Alabama, but there were no major red flags until he was 5 months old. He was having trouble swallowing, so doctors performed a procedure to remove some of the fluid off his brain, and soon thereafter he began having seizures, Leah said.
He spent another 45 days in the neonatal intensive care unit and developed several types of seizures, including infantile spasms, which are a rare and catastrophic form of childhood epilepsy.
“He would turn his head and look down to the left. He would repeat that over and over again,” Leah said. “He would do that 30 minutes to an hour, sometimes hundreds of times in a row.”
Eventually, doctors diagnosed him with the rare genetic mutation known as PPP2R1A. He was one of only 36 people in the world who have been diagnosed with it, Leah said.
Doctors at Children’s of Alabama hospital and Le Bonheur Children’s Hospital in Memphis tried almost 20 medications over three years, and while some of them worked briefly, they all eventually failed. “We ran out of options,” Leah said.
Just before Thanksgiving 2019, his doctor in Memphis told the Deasons Ozzie was dying. Then, surprisingly, Ozzie began to improve and between Valentine’s Day and June 2020 had the best months of his life, Leah said.
“He was happy, alert, awake, interactive and played with us,” she said.
While Ozzie couldn’t speak, he did a lot of cooing and mimicking sounds, the Deasons said. He also was good with switch-adapted toys that had buttons he could press with his head. His favorite was a choo-choo train that would make noises and play songs, Leah said.
He slept a lot and some days wouldn’t do anything at all. “We just had to learn to listen to him and let him guide what we did, knowing that his quality of life was more important than anything,” Leah said.
Then things went downhill at the end of the summer of 2020 as his gastrointestinal problems slowly worsened, the Deasons said.
“The epilepsy and his brain malformations essentially wore him out and eventually shut down his stomach,” Leah said. “He couldn’t take food anymore at the very end. He was in severe pain and couldn’t take food for the last six months of his life.”
Ozzie went on hospice care in August 2020 and died about 2:30 a.m. on April 26 of this year.
Photo by Jon Anderson.
Between 700 to 800 people showed up for the 2019 Alabama Walk to End Epilepsy at Railroad Park in Birmingham. The Deasons once again have formed a team called Ozzie’s Warriors to participate in the fourth annual Walk to End Epilepsy on Nov. 6 at Railroad Park in Birmingham. They’re hoping their team can raise $7,500 for the Epilepsy Foundation Alabama group.
‘Shine Like Ozzie’
The evening before he passed away, friends organized an online social media tribute called “Shine Like Ozzie,” encouraging people to pray for Ozzie, light a candle for him and share a picture of the candle on social media with the hashtag #shinelikeozzie.
“We got messages and candles from people literally all over the world,” including South America, Italy, Asia and Australia, Prime said.
The outpouring was so touching, Leah said. “I kind of feel like it led him home. I really do, like it was finally OK,” she said.
The Deasons said they were overwhelmed with expressions of love by the community. Almost all the houses on their street — and a huge chunk of the entire Lake Cyrus neighborhood — put out purple ribbons and balloons in remembrance of Ozzie, they said. Friends organized a Spirit Night at Chick-fil-A at The Grove, with a portion of money spent going to help pay for Ozzie’s funeral. And many people gave donations to Epilepsy Foundation Alabama, Jordan’s Guardian Angels (a rare disease organization) and Mickie’s Miracles (a pediatric epilepsy foundation).
Prime said that, because of COVID-19, he was blessed to be able to work from home and be with Ozzie every day for the last year and two months of his life. He works in storeroom management for Motion Industries.
Leah quit her job in medical sales when Ozzie was born to be his full-time caregiver and said adjusting to life without him has been so difficult.
“I’m not really adjusted to be honest,” she said. “He was my everything. To go from being with him every day to trying to figure out your next step in life — it’s been hard. … Nothing will ever come close to comparing to caring for him. That’s all I ever wanted to do. Nothing just seems as important anymore. I’m trying, taking it one day at a time and trying to figure out something that’s going to be meaningful and impactful and to make a difference in other people’s lives.”
She’s doing some contract data entry work right now and running an online Etsy shop with handmade macramé goods that she started in 2020 for extra income.
Walk to End Epilepsy
WHERE: Railroad Park in Birmingham
WHEN: Saturday, Nov. 6, registration at 10 a.m.; walk at 11 a.m.
COST: Free, but participants are asked to donate or raise money
WEB: walktoendepilepsy.org/birmingham
Touching others
Leah also has developed quite a following on social media. She created an Ozzie’s Warriors Facebook page with more than 5,200 followers, and her Instagram page called lifewithozzie has more than 35,700 followers from all over the world.
When she posted a video of their trip to the beach with Ozzie on Instagram, the video had 5.5 million views and about 300,000 likes, she said.
“His story kind of captivated hearts. People fell in love with him,” Leah said.
But Prime said people fell in love with Leah, too. Her uncensored and eloquent posts about the emotions of having a child with a rare and difficult condition touched a lot of people, he said. And Leah’s faith in God in the midst of trials was inspiring, he said.
“We’ve been through absolute hell, and our faith has really kept us strong,” Prime said.
Leah said she was amazed at how people would send her messages, saying they had never been close to God before and had never prayed before, but they were praying for Ozzie. The fact that Ozzie’s journey could bring someone closer to God gives her hope, she said.
Ozzie’s favorite song was “You Are My Sunshine,” Leah said. “He was our sunshine, and we want to let his light continue to shine.”
Anyone who wants to participate on the Ozzie’s Warriors team for the Walk to End Epilepsy can sign up to join the team or donate money in Ozzie’s honor by searching for the team name at walktoendepilepsy.org/Birmingham. People can also form their own team.
Registration for the 1-mile walk starts at 10 a.m., and the walk is scheduled to begin at 11 a.m. Organizers hope to raise $100,000 with the Birmingham walk this year.
