Two days after her baby girl died, Amy Wan journeyed through her quiet home–stripped of the sounds of her daughter’s coos and laughter—looking for what her daughter had been wearing that final day.
It had been Jan. 23, Wan recalled, and she had spent the morning changing her daughter out of soiled clothes because she had been vomiting all day. To cool down her low-grade fever, Wan dressed her in a random T-shirt, something she wouldn’t normally do, because they often irritated the scars on her baby’s head and got in the way of the tube in her stomach.
Calls to her neurologist became increasingly more urgent until she was finally advised to dial 911 and cut the shirt off with a pair of scissors so paramedics could have access when they arrived; it had gotten lost in the frenzy.
As she searched two days later, Wan found it, tiny and pink, torn and wrinkled, in a garbage can in her bedroom. A paramedic must have thrown it away, she thought.
When she picked it up, the message printed in bold letters on the front was clear as day.
“She will move mountains,” it read.
Sedona Wan de Guzman had been destined to do so from the day she was born.
The shirt was a gift from Sedona’s aunt and an ode to her favorite book, Dr. Seuss’ “Oh, the Places You’ll Go,” which reads, “Kid, you’ll move mountains! Today is your day! Your mountain is waiting. So… get on your way!”
By the time the baby girl was 17 months old, Sedona was well on her way. She had already accomplished more than her parents, doctors and nurses deemed possible.
Sedona could pick up social cues, open and close her left hand, roll over and even sit up on her own, all things that were complicated by her cerebral palsy, a neurological disorder that affects motor function and is commonly developed at birth.
For her parents, Amy Wan and Jonar de Guzman, every “inchstone”—a term typically used by parents of children with special needs to refer to moments that may not seem like milestones for other parents—was a cause for celebration.
They dreamed that one day their little girl would be able to walk and talk.
Born three months early on Aug. 5, 2021, Sedona suffered a brain injury known as an intraventricular hemorrhage at birth and spent six months in the neonatal intensive-care unit at Miller Children’s & Women’s Hospital, where she underwent four brain surgeries and had a gastrostomy tube placed in her stomach to help her eat. Doctors diagnosed her with spastic hemiplegic cerebral palsy, meaning she had a form of muscle stiffness that affected one side of her body.
In Sedona’s case, the injury she suffered at birth affected the brain tissue on the right side of her brain, so it limited the mobility on the left side of her body. According to her mother, she had very little mobility in her muscles and could not even lift up her own head when she left the hospital.
Early on, her parents were intent on early intervention therapy to give Sedona her best shot at a long, healthy, fulfilled life. And by the time she was 1, her bubbly, bright personality began to shine.
She gave kisses to everyone she encountered, played with her older brother Thomsan, 4, had learned how to communicate a few words like “dada” and “all done,” and was gaining strength and mobility in her muscles day by day. Her doctors and nurses noted that her achievements were miraculous for a baby with her condition, the family said.
But in late January, that miraculous progress came to a screeching halt when Sedona developed meningitis, a type of infection that causes swelling to the brain and spinal cord. She had been undergoing treatment for infantile spasms, Wan said, that were brought on by her cerebral palsy and caused her to have a weak immune system.
Sedona passed away suddenly on Jan. 23, less than a day after contracting the infection.
Everything Wan had planned for motherhood and raising a daughter was overtaken by grief and worry when she first learned of Sedona’s diagnosis. Without their family rallying around them to collectively plan and research the best treatment plans for Sedona, the couple would have been completely lost.
“There was so much we didn’t know starting off on this journey,” said Wan.
Cerebral palsy is the most common physical disability in childhood, with a prevalence of 2.1 cases per 1,000 children in high-income countries, according to a recent study in the Journal of the American Medical Association.
According to the study, early intervention for children with cerebral palsy optimizes neuroplasticity and motor function, meaning that the earlier a child gets proper treatment, the easier it will be for their brains to build and restructure connections to neurons that are not damaged, allowing for more mobility.
Knowing this, within the first two weeks after Sedona was born, Wan signed up for countless waitlists at treatment centers, joined Facebook support groups for parents with children that have cerebral palsy and learned as much as she could about how to best care for her daughter.
For Sedona, this meant rigorous and advanced treatments multiple times per week at TheraplayLA and when they finally got off the waitlist, at the NAPA Center in Los Angeles, too. Both treatment centers specialize in intensive therapy for children. Kids as young as Sedona were rarely seen at the NAPA center, Wan said, highlighting the need for early education on the benefits of this type of early intervention. By the time parents learned about treatment plans like the ones the NAPA center offered, their children were often 4 to 5 years old, she said.
“Time is potential,” de Guzman said. “Every kid deserves that.”
At the center, Sedona did dynamic movement intervention, also known as DMI, which forced her to build core strength and move her own body, unlike normal physical therapy, where a nurse would assist her with movements. Other treatments, like electrical muscle stimulation, also known as E-STIM, would stimulate Sedona’s brain to recognize the neurons in her body that worked and that she could use.
As time went on, watching Sedona’s progress was, in fact, like witnessing the movement of mountains, her parents said. Her summit was closer than ever.
The family eventually hired an at-home nurse who would take Sedona to her therapies. Wan often stayed home to call insurance companies while managing her own business, and de Guzman went to work as a physician every day. Navigating the system wasn’t easy, Wan said, and even with her husband’s medical background and her own professional experience with administrative tasks, they still had to jump through hoops to get Sedona the treatment she deserved.
“It literally takes a village for a kid, but specifically someone like Sedona,” de Guzman said.
They began to realize the bigger impact their journey could have.
The couple learned that many of the treatments Sedona was receiving were not covered by typical insurance or cost too much for an average family to afford.
In the NICU, they observed parents who could only visit their kids at night because they had to work during the day or had to leave to care for other children. In Facebook groups, Wan saw other moms post about how the nearest children’s hospital to them was a four-hour drive away, while Miller Children’s was only 10 minutes down the road.
In another instance, she spoke to a mother whose baby had also been recently diagnosed with cerebral palsy, who could not get herself to even think about researching what her next steps would be because the emotional pain that it brought on was too difficult to face.
After their daughter’s death, as they navigated their grief, Wan and de Guzman thought back on all of those encounters. They were determined to give other babies like Sedona their best shot at life, too. But how?
In their Signal Hill home on Wednesday, Feb. 8, family photos sat atop shelves, dozens of flower bouquets were piled up outside, and Sedona’s physical therapy equipment still hung from the ceiling. Within a day after Sedona died, the family said they were overwhelmed by the support they received.
Flowers were a lovely gesture, de Guzman said, but because he is severely allergic to them, the family began to think of alternative ways for their loved ones to show support.
At first, the couple figured they could ask for donations to the local children’s hospital, where Sedona spent a lot of her time. But then they remembered an old seed of an idea: to establish a foundation to support parents and children with diagnoses like Sedona’s, to educate them about the advantages of early intervention therapy, and to let them know they are not alone.
The thought first sprouted on a random date night in September. They dreamed that one day, after they retired, when their two children had grown up and Sedona’s health had improved, they could combine their respective professional expertise—de Guzman’s in medicine and wellness, and Wan’s in law and technology—to create a foundation for kids like Sedona.
They had no idea the day would come so soon. Their child’s death, far too early, propelled them into action. They created a GoFundMe, and within a day, the family had already received over $40,000 toward their cause.
On Friday morning, they reached their $100,000 goal and as of Sunday, they had raised more than $101,000.
“There’s other kids out there that deserve the best shot,” said de Guzman. “(Sedona) lived 17 months, but it was a meaningful 17 months, and who knows how much further she could have progressed? She was already showing such great signs of potential, so why not give that opportunity to other kids?”
Sedona could move mountains. Now, her family wants to ensure other children can, as well.
“This is like her legacy,” Wan said.
With the money they have raised, the family hopes to kickstart the foundation and focus their efforts in three ways. The first will be led by Sedona’s at-home nurse, Trish Loftis, and will educate parents on what to do after their children are discharged from intensive care units, including finding the best treatment centers to fit their child’s needs and teaching them how to navigate nursing services.
Secondly, they hope to produce a series of professionally led videos teaching parents about non-traditional early intervention therapies like those that helped Sedona, so that families without insurance or with geographic barriers can also access these life-changing therapies.
The family also hopes to open an online osteopathic children’s center, led by Sedona’s pediatric osteopath, Dr. Kathryn Gill, “to expand physician skills in treatment and help children reach their own miracles.”
They want to show other families that, “this is the potential that any baby who is similar to (Sedona) can have for their life,” de Guzman said.
A few days after Sedona died, struggling to make sense of what happened, Wan went through the memories she had of her daughter in pictures and videos on her phone. One photo stood out in particular.
It was like a sign from Sedona, Wan thought, to let her parents know that they are on the right path.
Pictured in the photo is a white board in the hospital room from the day Sedona was born. Scribbled in black marker are her respiratory levels and the names of her doctors and nurses.
Sedona’s name sits at the top, and doodled next to it is a set of mountains, with a sun peeking out from the horizon.
Wan had never noticed them until then.
Editor’s note: This story was updated to include TheraplayLA as one of Sedona’s therapy centers.