"She's my best friend," says Hailey of sister Olivia, who has a severe form of the condition
Hailey and Olivia Scheinman of Clearwater, Florida, have always shared a special bond as twins. But their lives, from their very first breaths when they were born 10 years ago, could not be more different.
Hailey, a bright, well-spoken child with golden hair to match her sunny demeanor, is healthy, active, curious and artistic.
Dark-haired Olivia, known by friends and family as “Livy,” doesn’t speak and cannot feed herself or walk. Her milestones are measured in small increments: the ability to hold her head up for a few extra minutes, or sleeping for a long stretch at night without a seizure.
Born with severe epilepsy and cerebral palsy, Livy’s pain is masked by a smile that touches everyone who meets her, says Hailey, the older twin by 70 minutes.
“Her smile is so pure and she’s always happy,” Hailey says. “Livy is my best friend in the whole world. Whenever I’m sad about something, I just go find Livy and give her a hug and she makes me feel better. More than anything, Livy gives people hope.”
It’s appropriate, then, that Hope is Livy’s middle name – and the inspiration for a charity started in 2013 by the Scheinmans. Motivated by their daughters’ unique bond and Hailey’s desire to do something to help her sister, Jon and Allison Scheinman started Livy’s Hope with the goal of raising $1 million for epilepsy research.
Thus far, the family’s various causes – paintings and bracelets made by Hailey, a Livy’s Kids Crew that does projects for people in need and Lemonade for Livy fundraisers – have brought in more than $32,000.
“Hailey’s example of compassion and love and Livy’s example of courage and grace are truly inspirational,” says Phil Gattone, president and CEO of the Epilepsy Foundation.
“Hope is a powerful thing when you are trying to change the world. The Scheinman family is changing fear and isolation into hope and inspiration for a community in need.”
On the day their twins were born, Jon and Allison were heartbroken and felt lost after watching Livy’s tiny body convulse in seizure after seizure. Hospitalized for nine months, Livy eventually went home with a devastating diagnosis: epilepsy and cerebral palsy caused by a brain malformation.
“It was excruciating to see Hailey so full of joy and thriving and Olivia lying there in pain with so many problems and the reality that she might not make it,” says Allison, 40.
“It was like night and day, like living two lives. Each of Hailey’s milestones – her first steps, her first words – just brought it all home. We cried and cried. It was a tough place to be in, and it was also very hard on our marriage.”
“Our dream of having healthy kids and doing all the things we thought we’d be doing as a family vanished,” says Jon, 43, an analytics director.
“For months at a time, we would lose Livy to seizures and our lives became gray. But over time, we learned to cope. I remember telling Livy, ‘I promise I’m going to help you. Someday, we’ll do something to make your life better.’ ”
A Unique Bond
Jon and Allison found strength in watching the unique bond form between Livy and Hailey. Although the girls have separate bedrooms due to Livy’s unpredictable wakefulness at night, the girls snuggle together at every opportunity, with Hailey reading picture books to her sister, brushing her hair and helping to feed her.
“I kiss her probably 40 times a day – I love her more than anything,” says Hailey, who speaks about her sister at local schools to “let them know that people with disabilities are people just like you.”
At age 6, when Hailey, then in kindergarten, heard her parents talking about Livy’s mounting medical bills (she has had two major brain surgeries), she offered to help, painting ladybugs and mermaids to sell on eBay, along with beaded bracelets.
“She sees in Livy a sister, a friend and a hero,” says Jon. “Livy is the heart of Livy’s Hope, but so is Hailey. She helped start it and she’s determined to make a difference in lots of kids’ lives, not just Livy’s. Together, our girls are showing that there really is hope in the world. Together, each in her own way, they are lifting people’s hearts.”
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