5-year-old South Ogden boy with epilepsy finds happiness in life
Paolo Natividad holds up his son Preston Natividad, 5, as he suffers a long term tonic seizure as they were leaving their South Ogden home for daycare Friday, March. 24, 2017.
Preston Natividad, just before his 5th birthday, eats lunch on Wednesday, March 1, at the Bright Horizons Family Solutions day care in Ogden.
Preston Natividad, just before his 5th birthday, sits amongst other students on Wednesday, March 1, at the Bright Horizons Family Solutions day care in Ogden.
Preston Natividad, just before his 5th birthday, plays in the living room of his home on Friday, Feb. 24, 2017, in South Ogden.
Preston Natividad, just before his 5th birthday, enjoys a nice day at home as his parents pack up their possessions before relocating their residence on Friday, Feb. 24, in South Ogden. Preston's parents, Miranda and Paolo, have made extensive sacrifices to try and help their son.
Preston Natividad, just before his 5th birthday, is carried by his mother, Miranda, to their car after getting off the school bus Wednesday, March 1, 2017. From there, she drives him to Bright Horizons Family Solutions daycare in Ogden.
OGDEN — The only way Preston Natividad looks different from other 5-year-olds is his white helmet covered in stickers.
An infectious smile and a propensity to cuddle draw people to this rambunctious child, who loves to throw his socks, clothes and anything else he can hold.
At preschool, Preston gets along well with the other kids.
“He just thinks everyone is there to play,” said his mother, Miranda Natividad. “If he happens to be pushed down during the course of play, he doesn’t get upset like other kids. He’s just there to enjoy life.”
His happiness comes in spite of frequent seizures that bring his life to a halt. The episodes immediately stop him, stiffen his muscles and sometimes cause him to lose consciousness, wearing him down.
He lives largely without being able to verbalize. His parents refer to his talk as “Preston-ese,” mostly a string of what outsiders might not understand. He might hold a conversation with his mother with a string of “Do, do, do.” At other times, he can form short sentences.
But there’s another side to Preston. He can explode into a tantrum at the simplest thing — on one recent day, for instance, because he doesn’t have his shoes on and it’s time to leave.
He’s a kid with a medical condition trying to be happy.
“He likes to play. He likes to run. He likes to eat,” said his father, Paolo Natividad. “As long as he has a full belly and someone to play with, he will play.”
Preston is diagnosed with Lennox-Gastaut Syndrome. His condition is a form of epilepsy with multiple types of seizures that cause stiffening and dropping of his head and limbs. His parents say he has more than 100 seizures a day, lasting from a few seconds up to several minutes each.
On Friday morning, Preston experienced the worst seizure he’s had in recent history.
The incident happened just as he was excitedly heading off to his day care.
The seizure caused his arm to stiffen, his head to droop and his legs to give way. His father held him up. Otherwise, he would have fallen to the ground.
Following the seizure, Preston laid on the floor, regaining his strength, for five minutes.
Preston is not known to have had any seizures that cause him to convulse, and his parents hope to do everything they can to make sure he never will.
He is scheduled for a hemispherectomy Tuesday, March 28, at Primary Children’s Hospital in Salt Lake City. The rare surgery — which doctors believe is done only dozens of times a year in the United States — will disconnect the two sides of his brain.
Among Preston’s eight other diagnoses are global delayed intellectual development, cerebral palsy, neurocognitive disorder and partial paralysis of the upper body muscles, according to his Intermountain Medical Center patient history. Doctors believe he experienced a stroke around the time of his birth.
His parents say Preston gets along fairly well until it’s time to sit still.
“My parents have taken him to church,” Paolo said. “There’s not crying, but he won’t sit down.”
For the most part, Miranda said, Preston does not follow commands, but he is slowly learning.
“He doesn’t understand social norms as quickly,” she said.
Paolo explains Preston’s tantrum over the shoes.
“We were trying to tell him, ‘If you stop crying and put your shoes on, we can go,’ ” he said. “He doesn’t understand to stop and get shoes. He just wants his way.”
Still, family members are impressed by how smart Preston can be despite his challenges.
His brother Chance Young, 20, is preparing to get married. Chance and his fiancee were discussing, in front of the boy, their desire to delay having children.
“I look over and I didn’t even know he was listening and he was just glaring,” Chance said. “He understands what we are saying. I just don’t believe he is developed enough to express it.”
Preston began to cry. Chance believes his brother recognized himself as a child and took the comment personally.
“He’s a smart boy,” Chance said. “Sometimes everything is trapped inside of him, and he can’t get it out.”
“He understands a lot, but has a difficult time expressing himself,” Miranda said.
Family members are hoping a $6,000 portable computer device will give Preston a voice once he learns how to use it.
As Preston touches a button, a voice on the small box with pictures says, “I want to play with a coloring book.”
When he presses another button with pictures of his cousins, the voice says “I like my cousins.”