November 8, 2014
Olivia, the daughter of Anna and Tom Ault of East Springfield, suffered a brain injury that caused a stroke in utero and seizures after birth, leading to a diagnosis of cortical visual impairment. Now age 7, she appears to be a typical girl but still faces setbacks from her condition.
"Olivia had a stroke before she was born and it caused brain injury, developmental delays and visual impairment. A lot of people do not know she's visually impaired until they get to know her," Anna said.
Her family is hoping to bring attention to children with her condition by supporting the start of a Pediatric Cortical Visual Impairment Society. Anna said the fundraiser began this past summer and plans are to contribute funds to the PCVIS and possibly present a check to the group during its annual convention in Omaha, Neb. She keeps in close contact with PCVIS President Richard Legge, who suggested the check presentation during the convention in June. The PCVIS is comprised of doctors and other medical professionals in the realm of cortical visual impairment, and Anna said surprisingly no such organization ever was in existence. With the formation of the new group, she hopes it will shed light on a condition that affects thousands of children.
"It is to help with research and support kids with CVI, among other things. They have to have $12,000 to start this organization and CVI doesn't have a society. Everyone on board has worked with kids in some way and CVI is the largest cause of visual impairment in children in western countries. It's a surprise that there's nothing out there like this," she said. "I thought, 'How could we help?' It's not only for Olivia, but it will help other kids with CVI as well."
Although Olivia lives in the Edison Local School District, she attends first grade at Hills Elementary School in Mingo Junction since it houses a visually impaired unit. School officials there have been assisting with her family's efforts and most recently collected $450 from a benefit dance and lemonade sale. Other Hills pupils donated $1 to attend, and organizers presented the family with a check at the conclusion.
Principal Cecilia Fritz said the school was happy to help Olivia and her family as they worked toward their goal.
"This is to help support Olivia. One year we voted for her to get a computer program and this is the first year for the dance," Fritz said "Last year, we held a dance for the United Way and it was a nice moneymaker. The kids dress up and it's like a social event for them."
Anna said teacher and family friend Melissa Brown contacted her with the idea.
"The whole community's response to Olivia and her needs is really amazing to me," Brown said, "This is what we want to do. We want to help out. It's amazing."
Total contributions so far have exceeded $1,300 and include profits from a GoFundMe webpage, a Thirty-One sales fundraiser and a lemonade and hot apple cider stand at the Unionport Apple Stirrin' Festival last month. Anna continued that online voting previously enabled Olivia and other kids like her to receive Lily LightAide device through Wonderbaby.org that utilizes LED lights, colors and movement for stimulation and learning. Wonderbaby.org is a project funded by Perkins School for the Blind in Watertown, Mass., the first school for the blind in the U.S. and where Helen Keller once was educated.
Because of her condition, Olivia also has issues with speech and cognition, making it difficult for her to communicate what she sees. She makes regular visits to doctors in West Penn Hospital in Pittsburgh and Children's Hospital in Cincinnati, plus she has therapy in North Lima. She can also count on her 5-year-old sister Amelia as a helper at home.
"She appears to be a happy, typical child and she continues to progress, but she is delayed. The stroke affected two-thirds of the right side of her brain," Anna explained. "The doctors told us to take her home and hope she smiles. What we have with Olivia is way past what we thought and our goal as parents is to push her way past where we think she can go."
Information can be found at the PCVI Society Fundraising link at GoFundMe.com and Olivia's CVI blog, "Hope She Smiles," at oliviacansmile.blogspot.com.
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