Life isn’t always easy for Tara Schlosser and her 4-year-old son Stefan, who suffers from a rare form of epilepsy that causes daily seizures. But when the Destrehan mother looks at her child, she clearly sees a gift.
“Everybody keeps saying, ‘You’re going to be blessed for this,’” Schlosser said, gesturing toward Stefan. “(But) I feel like I’m already blessed.”
Schlosser and her then-partner, Jessica, officially adopted Stefan in March of 2013, bringing a child badly in need of a home into theirs. He is the biological son of Schlosser’s first cousin; his birth parents battled and eventually succumbed to drug addiction in January of 2013, leaving Stefan orphaned.
In addition to that, the boy was born with cocaine in his system, and doctors soon discovered that epilepsy was affecting his brain.
While Schlosser said she and her cousin were not close, she saw a member of her family in desperate need of love and care.
“We had been wanting a child,” Schlosser added. “There was the opportunity. We were blind going in and didn’t know exactly what to expect … we knew he had epilepsy and was on medication, but we’d never experienced a seizure firsthand.”She admitted that at first, they weren’t sure they’d be up to the task.
“We had some doubts,” Schlosser said. “ I, especially, would never have done this alone. We have help with our families.”The seizures have been constant. He’s been officially diagnosed with Lennox-Gastaut syndrome, a type of epilepsy with multiple different types of seizures, particularly tonic (stiffening) and atonic (drop) seizures.
“It’s rare, and it’s resistant to all medications,” Schlosser explained. “So it doesn’t control his seizures.
He’s currently on four different kinds of anti-convulsion medications.
“He’s a trooper. He keeps going.”
Schlosser said the most recent medication seems to have helped curtail his seizures, but they aren’t eliminated. She said they’ve reoccurred two or three times a day of late — down from as many as 10 a day. He wears a helmet at all times to protect his head from a fall, and their home has been suited with a number of precautionary measures to make it a safe haven.
“You never know when the (seizures) will happen,” Schlosser said. “There are three specific types of seizures and he has all three of them.
“As he gets older, it’s going to be harder,” she added, tearing up as she looked at Stefan. “He’ll get taller and heavier … the taller you are, the harder you fall.”
There’s no known cure for Lennox-Gastaut.
“We just have faith and hope that he can grow out of it, basically,” Schlosser said.
Schlosser noted Stefan is developmentally delayed and doesn’t talk as result of the syndrome. But he is making progress.
He has attended Norco Elementary School since the age of three, where he is on a curriculum that sets gradually ascending goals for him to achieve and where he receives much individualized attention. Stefan has learned to sleep in his own room and has stopped hoarding food, both of which were issues in his early days with his new family; he was afraid of sleeping alone in his baby bed, which Schlosser said doctors attributed to him possibly being neglected and left in his bed without being fed enough before his adoption.
He’s also making more eye-contact, Schlosser says, adding to the affectionate personality he’s already shown.
“He likes when we give him hugs and kisses,” Schlosser said. “He loves to play and when we chase him around the house.
When we read to him, he responds well to it. He paysattention and he likes it.”
She noted he also has developed a habit of laughing in his sleep.
“Maybe he’s dreaming of himself running through a field just laughing. He does it very often,” Schlosser said.
She said Stefan is “a joy to be around.”
“In a way, he’s easy to care for in that he doesn’t want much,” Schlosser said. “He’s just Stefan. He’s a cool kid. To see him smile, it’s a reward in itself.”
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