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Photo Courtesy Of Hans Gutknecht

Santa Clarita Family Sets Up GoFundMe For 2-Year-Old Son With Chronic Lung Disease

After 895 days in the hospital, 2-year-old Elliot was finally able to come home for the first time in his life.


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On Feb. 18, 2016, Elliot was born prematurely at Kaiser Permanente in Panorama City. Weighing two pounds, 14 ounces, a ventilator was used to provide breathing support.

Because of this, Elliot developed severe Bronchopulmonary Dysplasia, a lung condition that can develop in premature babies, as well as babies who have treatment with a breathing machine, according to March of Dimes.

“Although he entered this world as a tiny preemie, he’s got more strength than anyone we’ve ever met,” said Sara Newcomb, Elliot’s mother. “His fight for life is undeniable.”

At 9 months old, Elliot was transferred to the pediatric intensive care unit at the Kaiser Center in Los Angeles, and underwent a bronchoscopy — a procedure that looks inside the lung airways.

Photo Courtesy Of Hans Gutknecht

It was then that doctors found he also had severe Tracheobronchomalacia, a rare condition that occurs when the walls of the airway become narrow or collapse, according to the National Institutes of Health.

During that time, Elliot became sick and wasn’t responding to the aid of the ventilator. Although doctors told the Newcomb’s that he would grow out of his situation and get better, he didn’t.

A few days before his first birthday, Elliot was put into a medically-induced coma.

About six weeks later, Elliot was still in a coma. His doctors were not sure how to keep him alive, and recommended the parents withdraw care since the ventilator was not improving his condition.

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After doctors told the Newcomb’s he was “the worst case they had ever seen,” Newcomb began to look for support in Facebook groups made for families with children who had similar conditions to her son.

“Thanks to the connective ability of social media, we were able to reach out to parents in different parts of the country who had children with lung issues similar to Elliot,” she said.

The eager mother reached out to another mother whose son was born in Oregon, but had found a hospital in Columbus, Ohio that had an entire unit dedicated to babies with Bronchopulmonary Dysplasia.

Amazingly we found our saving grace in Nationwide Children’s hospital,” said Newcomb.

The Newcomb’s decided to contact Nationwide Children’s Hospital, and even considered relocating from their Santa Clarita home to Ohio in an effort to save their son.

Photo Courtesy Of Hans Gutknecht

Unfortunately, the hospital was unable to treat him because they only admit children who are younger than one year old, but medical professionals from Kaiser were willing to follow their protocol.

“I thought, ‘If this doesn’t save him, maybe it’ll save other kids. Maybe doctors can learn from it,’” said Newcomb.

But Elliot’s condition improved, leading the way to life-saving protocols for other babies with similar lung issues.

Even when neonatologists, PICU intensivists, nurses and respiratory therapists were mystified as to how to treat Elliot’s lung disease, he kept fighting,” said Newcomb.

Elliot was released from the pediatric intensive care unit on Aug. 2, with the nickname “The Prince of the PICU” because of his long-duration hospital stay, and is still dependent on an incision in his windpipe to help him breathe, a gastrostomy tube to help him eat and a ventilator.

“Defying the odds is something he’s done from day one,” said Newcomb.

Because of his long-term hospitalization, Elliot has experienced developmental delays.

“His chronological age is 2 and a half years, but developmentally he’s a 6-month-old, “ said Newcomb.

The Newcomb’s are searching for ways to rehabilitate and strengthen their son’s development, but have found that the equipment needed to do so is expensive and not covered by the family’s insurance.

“He can hold up his head, but he can’t sit up on his own, doesn’t roll over and doesn’t stand on his own,” added Newcomb. “I’ve already found a chair that helps him, but it’s expensive.”

The family is asking for the community’s help and have set up a GoFundMe page.

Along with the equipment, the family will have to pay for out-of-pocket therapies like acupuncture and Anat Baniel Method therapy, which will help with movement, cognition, feeling and emotion.

“We also need to purchase a vehicle that better accommodates all his equipment, perhaps even a handicap van,” said Newcomb.

Having Elliot home has been “life changing” for the Newcomb’s and their two other children, but they say they “are still so blessed at how far our boy has already come.”

While looking for answers for her son’s medical condition, Newcomb met many families with Elliot’s health issues and wants to let other families know that giving up shouldn’t be an option.

“Whenever you’ve been told that your kid is sick, you have to be an advocate for your child. Listen to your instincts and fight — leave no stone unturned,” said Newcomb. “Trying to have peace about a situation like this is tough, but listen to your gut and keep fighting until there is no option. If there’s a chance something will help, try it.”

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Santa Clarita Family Sets Up GoFundMe For 2-Year-Old Son With Chronic Lung Disease

One comment

  1. God bless this family. This must be such a difficult time for them.

    Will you please provide an address we can send checks to rather than using Gofundme? The website takes a persentage and I want all the money donated to go to helping this beautiful family.

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About Lorena Mejia

Lorena was born and raised in the San Fernando Valley. She attended California State University Northridge where she double majored in Journalism and Chicano Studies and minored in Spanish Language Journalism. While at CSUN, she worked for the university's television and radio newscast. Through her journalistic work, she earned membership to Kappa Tau Alpha, a national honor society for selected journalists. Her passion for the community has introduced her to new people, ideas, and issues that have helped shape the person she is today. Lorena’s skills include using cameras as a tool to empower people by informing them and creating change in their communities. Some of her hobbies include reading the news, exploring the outdoors, and being an avid animal lover. To contact Lorena, send your messages to lorena@hometownstation.com.