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Zayln's Party

John Soerjawitaka feeds his son, Zayln Soerjawitaka, 4, pizza at his early birthday party Sunday at Cooper YMCA. Zayln suffers from a genetic disorder called trisomy 18 and will be going to Disney World through the Make-A-Wish Foundation. 

Soon after Zayln Soerjawitaka was born, doctors told his parents he would die.

Despite Zayln's being born nine weeks early, doctors couldn't explain at first why he was so ill.

After a few weeks, Zayln was diagnosed with trisomy 18 syndrome, a condition that deemed him “not compatible with life.”

About 90 to 95 percent of infants with trisomy 18 die within their first year. But Zayln will celebrate his fourth birthday Monday, and then leave the next morning on a trip to Disney World, where he will meet his hero, Mickey Mouse.

“He has Mickey Mouse shirts and Mickey Mouse cups,” said Zayln's mom, Melinda Soerjawitaka. “When we talk about leaving for the trip, he gets so excited, puts his hands above his head and says, ‘I can’t wait to see Mickey!’”

The trip is a wish granted from the Make-A-Wish Foundation, a nonprofit that arranges once-in-a-lifetime experiences for children with life-threatening medical conditions.

“First we visit the child and parents, to see what their request is,” said Zayln’s wish grantor, Lanny Carlson. “Some want to meet famous actors, go to Hawaii, you name it. But Disney World seemed like a good fit for him.”

Melinda Soerjawitaka and her husband, John, didn’t think they would ever be able to take Zayln on a trip like that.

Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common chromosomal condition after Down syndrome. It’s caused by an extra copy of the chromosome 18, according to the U.S. National Library of Medicine.

Children with the condition are diagnosed with one of three grades, depending on how many of their cells are affected. Zayln has mosaic trisomy, meaning only some of his cells are affected.

Trisomy 18 causes a number of abnormalities in children, such as heart defects, most of which eventually become fatal. Many surgeons won't operate on children with trisomy 18, but Zayln is being treated by Dr. James Hammel at Children’s Hospital in Omaha. Hammel is willing to perform surgery on Zayln, who has holes in his heart, if he would need it in the future.

“The (doctors) gave us what, at the time, was a very devastating diagnosis,” Melinda Soerjawitaka said. “We still never know how long we will get with him. But more and more doctors now are treating trisomy 18 babies.”

Besides his heart defect, Zayln also has a compromised immune system, is developmentally delayed and is the size of a 1-year-old. He attends the early childhood development program at Holmes Elementary and may go to kindergarten after another year.

The Make-A-Wish Foundation hosted a goodbye party on Sunday for Zayln, his parents and their other three children in preparation for their trip. 

“He’s a bubbly, great little guy,” Carlson said. “He runs around and loves to play with toys. You would never know he has an illness.”

When asked about what he was most excited for, Zayln said “Mickey Mouse” with a massive smile. They will begin their trip Tuesday, the day after his birthday.

“It’s a really great opportunity and we are so thankful we were given this wish,” Melinda Soerjawitaka said. “He used to be so fragile; we could have never done this. But now we can — and it’s going to be everything we dreamed of.”

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City desk intern

Summer 2018 city desk intern for the Journal Star.

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