BABYLON, N.Y. (CBSNewYork) – A Long Island couple whose baby was born with a very rare birth defect is working to help others recognize the signs and avoid some of the suffering they went through.

Now kids of all ages are helping spread the word about one little girl, reports CBS2’s Marc Liverman.

To some, 9-month-old Siennagrace Keefer is a complete stranger, but she’s one with a pretty amazing story.

“There was pressure on her brain, we didn’t know why she was so uncomfortable,” said Lacey Keefer, Siennagrace’s mother.

For seven long and painful months, Lacey and Patrick Keefer lived without knowing why their daughter was in pain. Doctors weren’t able to figure it out either.

“We saw her, when she would lay down there was pressure on her eye,” said Lacy. “Her eye couldn’t close all the way. She was uncomfortable when she slept, she was miserable every day.”

“For your kid all you want to do is help and you kind of feel helpless,” said Patrick.

The answers didn’t start coming until Siennagrace was 6 months old. Doctors diagnosed her with craniosynostosis, a rare birth defect where the bones in a baby’s skull join together too early.

MORE: Facts About Craniosynostosis From The Center For Disease Control And Prevention (CDC)

“There was a lot of relief at first, that ‘Oh my God we know what’s finally wrong with her,’” said Lacey. “It was very scary and it was hard, but there was an answer to what it was.”

She had to have an 8-hour surgery, a successful full skull reconstruction.

A few months later, they went to Babylon High School for an event created for Siennagrace called “Raising Toddlers Who Care.”

A few hundred people joined for toddler races, face painting, card making, but most of all, for raising awareness so other parents will know to bring it up to their pediatricians.

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