Jamie Yun and baby Yujia have lived through two difficult years of surgeries and h|Courtesy of Jamie Yun1/2
Jamie Yun and baby Yujia have lived through two difficult years of surgeries and h|Courtesy of Jamie Yun
Yujia was born with a birth defect called Esophageal Atresia, which means her esop|Courtesy of Jamie Yun2/2
Yujia was born with a birth defect called Esophageal Atresia, which means her esop|Courtesy of Jamie Yun
The struggle began for baby Yujia the day she was born, one month premature in a Singaporean hospital.
Her kidney was small and her heart pocked with holes. A blood clot found in her brain signaled that she might later suffer seizures. Most pressing, though, a birth defect meant the infant’s esophagus did not connect properly with her stomach, a condition called Esophageal Atresia, which in its various forms impacts about one in 4,000 newborns, according to the National Library of Medicine.
After two years of hospital stays and surgeries, Yujia is still not well, said her mom Jamie Yun. Seeking the safest and most effective treatment, Yun said she needs to bring Yujia to the world-renowned EA program at Boston Children’s Hospital. The price tag: $1.3 million.
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When a Boston doctor delivered the news of how much surgery and a six-month stay would cost, Yun said, “My heart sank … I gave up on the spot.”
So three weeks ago, Yun asked the world for help, launching a crowdfunding campaign on Indiegogo Life, which so far has raised close to $150,000. Another fundraiser on a Singapore-based site called GIVEasia has raised an additional $215,000.
Six weeks of fundraising remain and it appears the Yun family is approaching its goal.
“We never thought the response would be that overwhelming,” Yun said. “I just wanted to share our story to as many people as we could.”
Yun is not alone in asking the Internet for help paying medical bills.
Fundraisers for medical treatments are among the most popular on Indiegogo Life — the site’s branch that focuses on fundraising for personal needs or causes—said spokeswoman Elena Ginebreda-Frendel.
“Medical fundraisers do extremely well,” Ginebreda-Frendel said. “The most successful campaigns include an authentic, personal story to explain the impact the funds will have. When people have something personal to connect with, they are more likely to donate.”
Perhaps the fundraiser’s nearly 2,000 donors were wooed by a video attached to the campaign, a tear-jerking chronicle of the pudgy and adorable Yujia’s challenging infancy, her tiny body so often crisscrossed with tubes and surrounded by medical equipment.
Feeding Yujia through a tube inserted in her stomach and clearing excess saliva from her mouthevery two hours to keep her from choking have become rituals, Yun said last week via Skype. In the background, a very drowsy Yujia—stable for then—lounged in her father Wenlong's arms.
Yujia has also suffered a number of other maladies, Yun said, among them a retinal detachment in her right eye requiring surgery—she said doctors do not know how much of her vision she will recover.
Attempts to reconnect Yujia’s esophagus in Singapore have been unsuccessful, she said. After the latest round of treatment, she said, the child’s esophagus tore and her lungs collapsed—to recover, Yujia spent 43 days in an intensive care unit.
Yun said she wants her child to live her life as comfortably as possible, and is determined to help baby Yujia enter childhood eating by mouth, not through a tube.
“The goal is to end the misery,” Yun said.
Mom Jamie Yun’s message to supporters:
“I’m ashamed I couldn’t meet them face-to-face and tell them how thankful I am for every donation or contribution. It means so much to us.”
“Even though it’s difficult to raise that amount, every cent counts. I’m really thankful for every single donation contributed to baby Yujia. Even though we never met, I would like to say we are very grateful. Without your support we probably wouldn’t have had the chance to solve this issue. You’re a life-saver.”
TheEsophageal AtresiaTreatment Program at Boston Children’s Hospital, led by Dr. Russell Jennings, is the only one in the world offering a special treatment to reconnect stomach and esophagus tissue called the Foker Process.Dr. JohnFoker, a surgeon from University of Minnesota, developed the process, by which tissue is stimulated to grow into a healthy, properly attached organ. Foker collaborated with Children’s to found the program.
While effective, the Foker Process is not practiced worldwide because it is too challenging a feat for most hospitals, Jennings said. Not so for Children’s, he said.
“These are the most challenging cases faced by pediatric surgeons, no question,” Jennings said in a 2011 YouTube video. “We are arguably the best children’s hospital in the world. We have everything. If we don’t do this, this technique dies. And that means all these kids from around the world will not get treated, or will not get treated with the best care possible.”