Liberty Elementary School rallies for Schizencephaly Day

Published: May. 19, 2020 at 3:18 PM CDT
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COVID-19 has put a stop to many things. One thing it hasn't stopped is the community's commitment to spreading awareness for rare diseases.

Your childhood driveway might have certain memories attached to it, like the first time you pulled out of your garage when you were learning to drive. It might be the place you shot your first hoop. Tuesday, a little girl named Libby Wolff made a special memory right here in her family driveway.

Libby is a unique little girl.

"It's the smile that's going to melt your heart. It's the first thing that you're going to notice," said Libby's mother Kari Wolff.

Friends and family say she's touched many lives.

"She just lights up the room and brings so much joy," said Liberty Elementary Special Education Teacher Jena Lee Narum.

It's not just Libby's smile and personality that makes her special. She was born with incomparable spirit, but also a rare disease called schizencephaly.

"She is probably drastically impacted by it being nonverbal. She does suffer seizures and then has cerebral palsy as well. So, she's nonverbal, but she can express herself. It's just in her own special way," Wolff said.

Despite challenges from COVID-19, Libby's school rallied behind her in celebration of who she is.

"We wanted to celebrate Schizencephaly Day with Libby. Because we weren't able to do it at the school, we thought, 'well, we're going to bring it to her house.' And just show her that her Liberty family is here to show her love and support," Narum said.

The goal: to raise awareness for schizencephaly from the safety of Libby's driveway and to create a memory that will last a lifetime.

According to the Genetic and Rare Disease Information Center, one in about every 65,000 people born in the U.S. are diagnosed with schizencephaly. There is currently no known cure.

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