This story was originally published in the Miami Herald in partnership with the Lee Caplin School of Journalism & Media.
Mason Rodriguez had his first seizure at two and a half months old. It was May 7, 2022, the day before Mother’s Day.
Mason had just been nursed, and his father was the first to notice something wasn’t right. His child’s gaze had run off to the side, his arms had become stiff, and he was unresponsive.
Now at age 3, Mason has been diagnosed with epilepsy — along with chromosome abnormality, anemia, developmental delay, and hypotonia, or low muscle tone. He’s nonverbal, unable to walk independently, and has developed vision difficulties.
Many of his conditions are connected to and worsen with his seizures, which mainly occur at night.
“He’ll have a seizure for maybe a few minutes, but then after he comes out of it, it’ll be an hour, two hours, before I can get him to go back to sleep,” Mason’s mom, Elizabeth Rodriguez, said. “He’s just inconsolable, crying… scared.”
Mason physically recovers each time and doctors are optimistic for the long-term, but the ordeal impacts the entire family.
Sudden ambulance arrivals at their Coral Springs home and parents’ prolonged stays at the hospital have affected their eldest son, 9-year-old Matthias, leaving him with less support at his baseball games and less attention than he needs.
“For me and his dad, it’s just an emotional rollercoaster,” Elizabeth, 32, added. “Constantly not knowing what’s going to happen…how long it’s going to happen for, if it’s going to be an ER visit that happens, lack of sleep, appointments galore.”
At Arc Broward — an organization that offers support and schooling for people with disabilities — Mason’s teacher, Licebuth Seijas, tries to lessen that burden during school days. She accompanies the 3-year-old to his therapy sessions and works one-on-one with him.
“In the beginning, he can’t even keep eye contact for a second — he avoids the eye contact,” Seijas said. “But now, you talk to him, at least you can have something like two seconds, three seconds [of eye contact]. It’s a huge step in our work, in what we’re doing here.”
While parents Elizabeth and Manuel Rodriguez are at work, his paternal grandmother Mary Rodriguez, 63, takes care of the kids. She picks up Mason up from Arc every day at noon. This gives the boy a short school day, which helps him avoid falling asleep or having a seizure away from home.
“I can’t help but cry every damn time,” Mary said, lifting her sunglasses to wipe tears away. With Mason’s circumstances, she added that “you have hopes for your children, and you see that maybe he might not reach that, but that doesn’t mean he’s not worthy. He’s worthy of every opportunity.”
From Wish Book, the Rodriguez family would like a Cubby Bed — a smart bed capable of monitoring Mason and alerting his parents to signs of seizure during the night.
Currently, Mason sleeps in a crib. For his security, a canopy covers its top, and cut-up pool noodles soften the hard slats. But the 3-year-old is growing, and needs more space.
“That would be a huge blessing,” Mary said of the Cubby Bed. “Not only for his safety…You can actually go in with him… [when] his nights are so restless.”
“It has a camera in it, it’s bigger — I can lay down with him and comfort him that way,” Elizabeth added. “All around, it’s something he can grow with.”
