WAUWATOSA (WITI) -- A Menomonee Falls baby is battling a rare medical condition -- and needs your help writing a happy ending to her story.
Before Vivian Johnson was born, ultrasounds detected that she had major brain abnormalities. After birth, she was diagnosed with Chiari Malformation -- an extremely rare congenital disorder. It causes the brain to fall to the back of the skull and put pressure on the spinal cord.
"It's baffling, things we've heard and stumped and unique. Not another case to look at to compare it to. No textbook to go off of," said Clay Johnson, Vivian's father.
Vivian is now five months old. She was born at Children's Hospital of Wisconsin and hasn't left. Bringing her home is the goal.
"But when there's no answer or no definite question to answer, it's hard to keep that in perspective," said Sarah Johnson, Vivian's mother.
Vivian has had two brain surgeries and countless MRIs. She now has fluid building up in her spine -- and has what doctors are calling episodes that cause her to lose consciousness and stop breathing.
"Without a date or timeline or end in sight, how do you take it more than one day at a time? I know it's cliche to say that," said Clay Johnson.
Vivian's parents rotate spending nights at the hospital so their daughter is not along. Both have had to cut back on work to care for her.
Meanwhile, there is a fundraiser to help Vivian's family pay for her ongoing medical care. That will be in April. You can also donate to Vivian's cause by visiting her GoFundMe page.