Syanne Landron’s second birthday was supposed to be a coming-out party.
The girl who loves dresses, wants to be Princess Moana and giggles when she’s excited was born in Ventura on Aug. 21, 2024, without the T cells that help build the body’s immune system. She has lived in a figurative bubble nearly her entire life, isolated from friends, relatives and everyone except her parents and 7-year-old brother Dean.
A year ago, she underwent a $3 million thymus gland implant procedure at Duke University in North Carolina. The surgery, covered by insurance, was designed to allow Syanne’s body to produce the T cells that are frontline defenders in the body’s immunity system.
Without the procedure, she would almost certainly die.
Syanne’s T cell count is
still very low – about 120 instead of the goal of 1,500. But her immunities had grown enough that she was able to have carefully arranged play dates with friends. She saw her first movie in an actual theater. It was the live-action movie “Moana.”
“She literally giggled the whole time,” said her mother, Marilyn Landron, explaining how the toddler alternated greetings to other moviegoers with shoutouts to her favorite princess. “She’s like, ‘Hi! Moana!”
Sy’s father, Alex Landron, is in the Navy and the family lives at Naval Base Ventura County Point Mugu. They planned a purple princess-themed birthday party at a park on the base. They invited family and friends. They envisioned a day of games, presents and Syanne's favorite cake, strawberries and cream.
It would have been the little girl’s first real party and a way to see how life might be some day.
“It wasn’t like the end of the bubble but it was like the beginning of the end,” Marilyn said in a telephone interview on birthday eve at UCLA Mattel Children’s Hospital.
Party plans changed when Syanne spiked a fever and developed inflammation. Her feeding tube shifted, her lymph nodes swelled and the calcium levels in her blood fell while the potassium and phosphorous rose.
It’s a setback that landed her back in the hospital though doctors say she could be released in days.
The news meant the birthday party was held in the hospital’s indoor play area. Syanne wore a mask, a tiara and a sparkly princess outfit. Her grandparents were there and so were family friends.
It was fun. But it wasn't a coming out.
"They did a phenomenal job," Marilyn said of the hospital staff. "We're disappointed that it wasn't in the park. It wasn't the milestone we were hoping to have."
Doctors remain optimistic and simultaneously cautious. Dr. Caroline Kuo, UCLA pediatric immunologist, said hurdles and challenges are part of the process. She said the monitoring of Syanne will continue.
"We're still waiting for her immune system to come in," she said, noting the gland implanted in Syanne is much smaller than a normal thymus. "It takes time for the T cells we need to come back."
Rising toward hope
The afternoon before her birthday, Syanne held a tea party in her hospital room. Guests included her mother, a doll and a stuffed bear in a nurse’s outfit. In a FaceTime video, Syanne hugged the large stuffed animal that is Stitch from Disney's “Lilo and Stitch.” She picked the toy out herself in the hospital gift shop in her first visit ever to a real store.
“She was trying to grab things and take them with her,” Marilyn said. “She was giggling the whole time.”
They saw a stuffed bird toy, too. It’s a Phoenix, the mythical winged being used as a symbol by the Luca Rising Foundation. The group raises money and awareness for the exceptionally rare condition, congential athymia, where kids like Syanne are born without the gland that trains the body's T cells.
The Phoenix fits the mission because it’s rising from ashes toward hope. The Landrons bought that stuffed animal, too.
“For me,” Marilyn said, admitting she cried when she saw it. The toy represented the community that is fighting with Sy and others like her. It also shows the family's mindset.
"It doesn't define who she is," Marilyn said of her daughter's condition. "She still gets to push and fight and pave a road for herself."
Minutes after the FaceTime conversation ended, Marilyn called again. Doctors had just come into the hospital room with big news.
Tests showed Syanne’s body was not rejecting her new thymus gland. The specter of that rejection, called graft versus host, was one of the family’s biggest fears. It would have meant Sy's body was fighting itself.
The results mean the path out of the bubble continues albeit slowly. There are still health barriers to figure out, but the family is still moving forward.
“I literally just started crying,” Marilyn said of the same test results. “We don’t have to take the step back.”
They feel as if they're beginning to peek out of the edges of the bubble. Doctors have given the family clearance for another milestone. They can take Syanne shopping in a Target store.
To Marilyn, who has talked about a Target trip for more than a year, it’s a symbol of being able to interact with other people and experience the same things other families do. It's also part of a juggling act.
The family will always have to live minute by minute, she said. Their definition of “normal” will always be couched by trepidation.
“I think we will have a Syanne version of normal,” Marilyn said, offering hope that life will still have its shopping trips, play dates, movies and birthday parties.
“I want her to be able to live, not just to be alive,” she said.
Tom Kisken covers health care and other news for the Ventura County Star. Reach him at tom.kisken@vcstar.com.
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This article originally appeared on Ventura County Star: Ventura County girl born without T cells turns 2 in hospital
