Layla Paige Sonnen was a warrior princess.
The blue-eyed, blonde-haired little girl—born in April 9, 2015, to parents Matt and Larissa—was named for the Eric Clapton song ‘Layla’ and in honor of Jimmy Page from rock band Led Zeppelin.
She and her older brother, Luke, were also homages to Star Wars’ Luke and Leia.
“We thought she was perfect, normal and healthy,” Larissa explained of her daughter.
That was until October 26, 2015, when then six-month-old Layla had her first grand mal seizure.
“We were sleeping and I could hear her breathing really rapidly,” Larissa said. “When I looked at her, her little fists were in front of her face and her eyes were darting back and forth...we got so scared.”
After an ultrasound of Layla’s brain, her pediatrician urged the Redondo Beach family to go to Children’s Hospital Los Angeles for an MRI and electroencephalogram.
When the doctors came in to review the results with Larissa, the mother of two rapidly began writing key words and phrases on a notepad to look up online later.
But a doctor put his hand over her pen to stop her and what he said next tipped Larissa off that something was truly wrong.
“He said ‘if you’re going to go to the internet, don’t look up these words...just ask for prayers,’” she said.
Due to an undiagnosable brain disorder, Layla was suffering from several different types of seizures simultaneously and her brain development was being hindered.
Although the little girl had healthy eyes and ears, her brain could not decipher that data from those organs so she was blind and deaf, according to her mother.
“It was a lot of really difficult times,” Larissa said. “Our little warrior princess fought the good fight for two years...but her brain just couldn’t keep up with her body.”
When Layla’s nervous system began breaking down around her 2nd birthday, the toddler would go through episodes of excruciating pain, crying hysterically for hours.
The family had to shift their thinking to help Layla be more comfortable, Larissa explained.
That’s when Providence TrinityKids Care in Torrance, the only dedicated pediatric hospice program in Los Angeles and Orange Counties, came into play.
The team there helped the Sonnens in what Larissa called a holistic approach.
This meant caring for the whole family, she said, including helping little Luke—who was between three and four years old while this was happening—understand the concepts of death and dying.
TrinityKids Care also helped streamline Layla’s many medications into a single door-step delivery and supported the family daily.
“Everyday they were there,” Larissa said. “There were some days I really didn’t know if I was going to make it, mentally. But just knowing they were there...they gave us so much.”
On July 8, 2017 at 3:58 a.m., at 2 years, 2 months and 29 days old, Layla Paige passed away at home, in her mother’s arms.
“I was holding her when she took her last breath,” Larissa said, adding that it TrinityCare’s assistance that made it possible for the little girl to be home with her family. “They gave me something that I will forever have and that was her last breath. It’s hard to even grab the words to express what they’ve given to me as her mother.”
That’s why the Sonnen family reached out to TrinityKids Care to organize a special event in Layla’s honor and to give back to the team the family says gave them so much during the most difficult time of their lives.
Thus, the idea for a fundraising nature walk in memory of the bright-eye little girl to give back to the palliative care center was born.
Layla Paige’s Nature Walk for TrinityKids Care will take place Saturday, Oct. 12, at the South Coast Botanic Garden at 26300 Crenshaw Boulevard, Palos Verdes Peninsula.
“The idea and the inspiration goes back to Layla and the Sonnens,” explained Executive Director Brett Beck of the TrinityCare Foundation, the nonprofit fundraising arm of Providence TrinityCare Hospice. “Since Layla passed, they have been wanting to do something to bring the community together and give back to other kids at TrinityCare.”
The day will include a brief walk around the facility’s rose garden for younger children and a longer walk around the nearly 1-mile perimeter of the botanical garden for others.
There will also be food and drink vendors, fun booths such as face painting and selfies, lawn games and a raffle for 17 prize packages.
And special celebrity guest Jack Black will emcee the event, according to organizers.
“Little Layla had an incurable brain disorder. She and her family were loved and cared for by TrinityKids Care,” Black said in a statement. “I’m honored to support TrinityKids Care so it can help other children and families through some really tough times.”
Registration, which includes a t-shirt and a raffle ticket, is $35 per person, $15 for children ages 3-17 and free for children under 3.
Participants can also directly donate and fundraise. Those who fundraise more than $3,000 will get a special meet and greet with Black the morning of the event.
For the Sonnens, the event is a chance to memorialize Layla while supporting TrinityKids Care and other families going through similar situations.
“We don’t want to make it a sad day, we want to make it a celebration for this wonderful organization that gives their heart and soul for these families,” Larissa said. “Sometimes you just have to turn the why into ‘there’s more’….maybe it’s for us to carry on her story and help other families.”
To register and fundraise for Layla’s Walk at California.providence.org/ptcevents or call 310-543-3440.