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Doctors said she wouldn't live this long, 55 surgeries later, this 5-year-old is still smiling

Posted at 6:26 PM, Aug 13, 2020
and last updated 2020-08-14 10:55:55-04

MENOMONEE FALLS — Doctors said she wouldn't live this long. But now, a 5-year-old from Menomonee Falls is the strongest she has ever been.

"But she came out and she’s stronger than ever right," Vivian Johnson's mom, Sarah, said.

Behind this infectious smile, is the resilient spirit of someone who has overcome more than anyone thought possible.


Five-year-old Vivian from Menomonee Falls has had 55 surgeries because of a rare neurological disorder called Chiari Malformation. Her skull is an abnormal shape that pushes brain tissue into her spinal canal. Doctors didn’t think she’d live this long, but Vivian is strong.

"Since about February she’s the healthiest she’s ever been,” Vivian's mom said.

Vivian can't walk perfectly on her own. Often she uses a walker, stroller, or wheelchair. She is connected to a respirator and can't talk too much, so she uses sign language. However, none of that takes her patented ear to ear smile away.

Two weeks before her sixth birthday, she is sharing an alleyway near Appleton and Main in the Falls with other artists to bring her message to the world.

"To remain hopeful and faithful and even if things seem like they’re not going the way they should you can come out on top and she’s just a true testament of that," Vivian's mom said.

She is painting 229 balloons - one for reach day she spent in the NICU at Children's Hospital.

It's a reminder to keep our spirits up, floating like a balloon, no matter what we're going through.

Vivian Johnson, 5, has a smile worth a million bucks, and a story to break your heart. She has had 55 surgeries for her Chiari Malformation. It's caused by an abnormally small or shaped skull that pushes brain tissue into her spinal canal. None of that can take her smile away as she paints a mural of hope and resiliency near Appleton Avenue and Main Street in Menomonee Falls.

"And if she can do that with all that she’s has to go through there's no reason we can't carry on," Vivian's mom said/

Because sometimes things are out of our control. But a smile is never one of them.

“Vivian is literally the happiest child I've ever met. She always always has a smile on her face. She loves meeting people and being out. She compliments everyone by telling them they're cute," Vivian's mom said.

The mural should be done in the next week or so. The family also has a gofundme to help with medical costs. You can donate by clicking on this link.

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