Meet Olivia: 2017 Speak Now for Kids Family Advocacy Hero

At two months old, Olivia began experiencing seizures. That day, the family sought emergency medical attention from a neurologist at the Children’s Hospital of Chicago. The results of an MRI, eye exam, and other testing confirmed that Olivia had Aicardi Syndrome, a rare condition caused by a genetic mutation that limits physical and cognitive development. Girls with her diagnosis have an average life expectancy of eight years.

Despite the “shock and heartbreak” of learning that her daughter’s illness was not curable, Olivia’s mother has “always been impressed and thankful that the children's hospital diagnosed her rare syndrome in less than 24 hours. There was a relief in knowing what we were dealing with.”


When Olivia's family moved to New York in 2012, her medical issues took a turn for the worse and she battled periods of respiratory distress requiring frequent admissions to Maria Fareri Children's Hospital and stretches of time where she would have upwards of 10 seizures per day — including many at night. Her home is filled with medical equipment and has become a primary source of care. A Care at Home Medicaid waiver provides a skilled nurse to watch over Olivia at her bedside every night which has improved the quality of life for Olivia and her family, and significantly reduced her number of hospital admissions.

“To have the peace of mind to care for your daughter in your home is priceless,” remarks Olivia’s mother. “The nursing care has given my husband and me a chance to just be her parents, instead of having to always be her caregivers too.”

Those who know Olivia know that she has a gentle and peaceful heart. Olivia really enjoys her life, her school and family, and Olivia’s resilience is a quality to be admired. The challenges created by Aicardi Syndrome have not stopped Olivia from participating in the same kinds of activities as other kids, including going to school, being a Daisy Girl Scout, spending time with her dog and loving her brother.

Help us welcome Olivia to Washington, D.C.!

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