Juliet Strasburg was born to Jailyn and Justin Strasburg on May 15, 2014. A beautiful baby girl with blonde hair and blue eyes, she was virtually perfect.
All of Juliet’s newborn checkups seemed to go well, with the exception of some spots in her big blue eyes that were later determined to be cataracts.
As time went on, though, her parents discovered something just wasn’t right.
“She didn’t seem to be growing,” said her father, Justin, of Arnold, despite the fact that she was eating, or trying to eat, just as any other newborn would.
They made an appointment with a pediatrician in Kearney, who diagnosed Juliet with failure to thrive and admitted her to the hospital. They started using a Nasogastric (NG) feeding tube to try to help her gain weight. During the hospital stay, an MRI revealed that Juliet has a rare birth defect called agenesis of the corpus callosum (ACC). Basically, she’s missing the corpus callosum, or the band of white matter connecting the two hemispheres of the brain.
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Her pediatrician got Juliet an appointment at Children’s Hospital in Omaha, where an geneticist immediately started trying to figure out the problem. In the meantime, it was decided to put a G-Button feeding system in, which would allow nutrients to go directly to her stomach.
After a few hospital stays and many tests, a follow-up appointment brought the Strasburgs an answer. On Dec. 11, 2014, Juliet was diagnosed with Vici Syndrome.
“Vici Syndrome (VS) is an extremely rare multi-system disorder characterized by an absence of corpus callosum, low muscle tone, significant developmental delays, cataracts, heart muscle disease, abnormalities of the immune system, seizures, recurrent severe infections and in some cases loss of hearing,” according to liftinglila.org.
“I think she was the 21st case,” Justin said.
Only two other cases have been reported in the United States. The first VS case was reported in 1988, but scientists were not able to find out what gene caused the syndrome until 2012. Justin said many cases are discovered post-mortem. The life expectancy for children with VS varies between three and eight years.
The staff at Children’s Hospital isn’t familiar with the disease because of its rarity, but they are working to research it. For now, little Juliet is continuing to spend time in and out of the hospital due to her weak immune system. She’s currently hospitalized due to an infection.
“We’ve spent as much time here as at home in the last seven months,” Justin said.
The family has had to learn to balance time at home and at the hospital, as well as time with their other two children Piper, 6, and Parker, 3.
Jailyn’s high school classmates will organize a benefit for the family to help with travel, medical and general expenses. The benefit will take place on Feb. 28, which happens to be Rare Disease Day, Justin said, although it wasn’t planned that way on purpose.
A soup, sandwich and pie supper will be served from 5-7 p.m. for a freewill donation. There will also be a silent auction with winners announced at 7 p.m.
Anyone who would like to donate items to the silent auction can contact Ashley Meyer at 660-5936.
To follow more of Juliet’s story, visit her parents’ blog online at rarejul.com.