- Associated Press - Friday, April 7, 2017

SOUTH OGDEN, Utah (AP) - If love is all, then the Natividad family of South Ogden, Utah, is truly blessed.

Preston Natividad, who just turned 5 years old, has a combination of conditions that cause developmental delays and more than 100 seizures a day - up to 10 in an hour. His family members say they’ve learned to love deeply through the sacrifices they’ve made.

“My life is 24/7 Preston for sure,” said Preston’s mother, Miranda Natividad. “I’ve had a 1-year-old now for 4 years and he’s a much taller 1-year-old than most 1-year-olds.”

Preston is diagnosed with Lennox-Gastaut Syndrome. The condition is a type of epilepsy, with multiple types of seizures that cause stiffening and dropping the head and limbs.

Lennox-Gastaut Syndrome is seen in only 4 percent of all pediatric epileptic patients, Miranda Natividad said.

Aside from epilepsy, Preston has delayed intellectual development, cerebral palsy, neurocognitive disorder and partial paralysis of the upper body muscles. Doctors believe he experienced a stroke around the time of his birth.

In an effort to reduce the number of seizures, the boy is scheduled for a hemispherectomy at Primary Children’s Hospital in Salt Lake City. It’s a rare surgery in which doctors disconnect the two sides of the brain. Even if the procedure is successful, it will keep him from using his right side for the rest of his life.

Ideally, Preston’s father Paolo Natividad hopes the surgery will cure Preston of seizures. Even with the side effects, “any reduction (in seizures) is good,” he said. They also hope Preston’s speech will improve and increase his learning capacity.

But Preston’s parents know there’s a chance the outcome could include additional setbacks, too.

“It’s like bargaining with epilepsy,” Preston’s mom said. “It’s like saying ‘OK, you win. This is what we will do if you will back off.’”

Preston’s side effects from the procedure could include an even more limited use of his left side. He already has difficulty getting his left hand to open properly. Other risks include vision loss and fluid in the brain, among a host of other side effects too long to list, Miranda Natividad said.

“I haven’t wanted to research,” Miranda Natividad said. “I don’t want to worry about it right now. It’s too much to take in.”

MANY FAILED TREATMENTS

When Preston missed some milestones at 6 1/2 months, Miranda Natividad said pediatrician Alexandra Barrera ordered an MRI.

“She recognized the delays and she took action,” she said. “I feel like a lot of pediatricians would have said ‘Let’s wait a little bit longer.’”

From that image came his diagnosis and a swarm of efforts to combat the infantile spasms he was experiencing.

Preston has undergone seven types of drug treatments, a ketogenic diet and treatment with cannabis oil. Each treatment gave him brief improvement but, over time, he worsened again.

His mother said searching for answers has overwhelmed the family. As each treatment failed, Preston’s losses hit harder.

“I would have liked to have tried whole plant marijuana,” Miranda Natividad said.

But the family didn’t want to break Utah law or move out of state.

“He needs me to be present,” she said of Preston. “Going to jail wasn’t an option.”

They’ve already skirted Utah law with cannabis oil. They got a permit but still had to purchase it out of state - bringing the substance over state lines is illegal. And even then, the cannabis oil didn’t work well enough to continue the risk.

“You see the results and you just want to keep going and going and going. It’s almost like a gambling addiction,” Miranda Natividad said.

The surgery is their next logical step, they believe, and while doctors are optimistic, Preston’s parents are well-practiced at not getting their hopes up.

“The doctors are more optimistic than we are, but you know, we’ve been in the trenches so it’s easy to get pessimistic,” Miranda Natividad said. “We’ve seen the results enough to know that any subsequent treatment is likely not to work.”

Dr. Robert J. Bollo, a pediatric neurosurgeon at Primary Children’s Medical Center, said families often are afraid of surgery, especially for children, until all other options are exhausted. A successful surgery might convince other parents to opt for surgical solutions, too.

“With surgery, we often have an opportunity for a cure,” he said.

HIGH COSTS FOR CARE

Parenting Preston has tried the Natividad family’s strength in every way. They say the rewards of learning to love are equal to the sacrifices required of caring for someone of their son’s capacity.

Preston requires extra attention for his daily routine to get him off to daycare and preschool on a bus. She meets him at the bus stop after school each day to take him to daycare. She doesn’t know what would happen to Preston if she wasn’t there to meet him. She said she hasn’t applied for advancements within her job because of the huge time requirement.

Paolo Natividad was enrolled in Weber State University’s pre-pharmacy program until Preston’s diagnosis. His studies proved too strenuous while centering his life around his son’s needs.

Older brothers Chance Young, 20, and Gabe Young, 18, have stepped up to take over parenting duties in a pinch.

Paolo Natividad said he worries about Preston’s future, especially if he dies before his son. He hopes the other children will be able to take responsibility for Preston should he outlive him and his wife.

“I kind of feel like I love my older kids more since he’s been born because I’ve seen how wonderful they are with him,” Miranda Natividad said.

The toughest thing for her has been holding Preston down while doctors give him shots and take his blood.

“When he’s hurt or has to go through a procedure, your heart breaks but you know it has to be done,” she said. “It’s me he’s looking at. …Sometimes it feels almost inhumane. I would almost rather have him looking in my eyes rather than in a stranger’s.”

On top of that, medical, dietary, therapy and equipment expenses and co-payments have robbed the family of their home. Treatments have cost as much as $1,400 each month that wasn’t covered by insurance. Paying out of pocket expenses put them behind on their house payments. They lost their home in 2013 and have rented since.

A landlord sold their previous rental and in addition to preparing for major surgery, they decided to move earlier this month so they wouldn’t have to move Preston after the surgery.

Miranda Natividad said co-payments and yearly $7,000 minimum deductibles added up, but expenses have become more bearable since November 2015 when the family received secondary coverage from a Medically Complex Children’s Waiver through Medicaid.

THE STRENGTH OF LOVE

Through it all, Miranda Natividad said she’s learned she’s much tougher than she thought.

“You get to the point where you learn that the sun is going to come up tomorrow,” she said.

Being there for their son was never in doubt, according to Paolo Natividad.

“It was never a question of whether our family will fall apart,” Paolo Natividad said. “We just rally around him and see what we can do.”

The parents also have learned to accept that Preston will sometimes get hurt.

“We know we have to cope,” Paolo Natividad said. “As much as we’d like to wrap him up in bubble wrap, we can’t.”

They’ve learned to “go with the flow” of life with a child who doesn’t always know how to react to his condition. What some people may view as him throwing frequent tantrums may be the result of seizures and his fear of losing control of his body, his mother said.

Miranda Natividad said when her son throws a tantrum in the store, she just sits down with him and waits it out. She considers people’s sometimes negative reactions to be “their problems.”

And seeing him persevere is its own kind of reward.

“Any obstacle he overcomes, you know how hard he’s worked for it,” his mom said. “When you have a special needs child, there is so much heartache involved, you cling to every little thing, no matter how insignificant.”

The family believes all the difficulties are worth all the love and joy they feel for Preston.

“He’s pretty incredible,” Miranda Natividad said. “That doesn’t make it easy. It just makes it worth it.”

___

Information from: Standard-Examiner, https://www.standard.net

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