ST. PETERSBURG — It's everything 8-year-old Olivia Scheinman can do to keep her eyes open as she waits for her twin sister, Hailey, in the lobby at All Children's Hospital.
Hailey and Olivia know the lobby, and every other nook, cranny and play zone at All Children's all too well.
It's where Olivia was rushed into intensive care with a seizure moments after she was born. It's where the twins grew up; Olivia receiving countless treatments, therapy sessions and two brain surgeries for the multifocal partial epilepsy that has left her with a brain malformation and severe disabilities, and Hailey and her parents, Jon and Allison Scheinman, waiting and watching for Olivia.
Hailey's life revolves around Livy, but she wouldn't have it any other way. As Olivia fought to keep her heavy eyelids open Friday afternoon, despite little tickles and kisses from her grandparents and father, she sprang to life with a wide, toothy smile when Hailey skipped up to her pink wheelchair and planted a big kiss on her cheek, announcing her presence with a bright and plucky “I'm here!”
In tow was a gaggle of giggling girls — seventh- and eighth-graders at Safety Harbor Montessori School in Clearwater who were delivering 50 homemade bracelets to children at the hospital and hundreds of books to the Ronald McDonald House. The girls, students of Olivia and Hailey's aunt, Meaghon Ross, have dedicated the past six Fridays to helping Livy's Hope for a Cure, an epilepsy support organization born out of the family's struggles financing and coping with the countless therapy sessions, thousands of dollars apiece, that Olivia required.
Hailey, then 6, heard her parents talking about their mounting bills one night and said she wanted to help. She started selling beaded bracelets and her artwork on eBay, original paintings of ladybugs, elephants, ant hills and mermaids like the one that proudly hangs in her grandfather's “man cave.” Her first painting, “Spring is Coming,” sold for $66, Hailey said. Each time she refreshed her computer the bids kept going up and up and up. As Hailey's efforts grew, so did the family's ambitions.
“I've seen them hit such low times, but now they're at such a healthy point where all they want to do is inspire, help others and help themselves because in their hardest times they could have used that help,” said Ross, the children's teacher and Allison's sister. “No one could have imagined that they could do all of this at such a high level. They have such big hearts, and we all look at them and wish we could be so loving and giving.”
This year, the Scheinmans launched Livy's Hope, where they sell everything from lemonade to bracelets, T-shirts, artwork and other items to raise money for research. Each Friday, students at Hailey's school, Leila G. Davis Elementary in Clearwater, Olivia's school, Paul B. Stephens Exceptional Student Education Center in Clearwater, and countless others wear purple in a show of solidarity for Livy's Hope. In November, the family raised $8,000 in a Willy Wonka and the Chocolate Factory-themed fundraiser with nearly 200 people at Ruth Eckerd Hall in Clearwater. They send binders with information for families of children with epilepsy, and the family's website, www.livyshope.com, has grown from a vehicle to sell Hailey's bracelets into an online community of resources, inspirational stories and networking for families of children with epilepsy.
The goal is to raise $1 million for epilepsy research.
Livy's Hope has brought the family together, but there are still struggles.
“When Livy was born, there was a piece of us that we kind of lost, but I think her doing well after all these surgeries and being able to help all these people has made us whole again,” Jon said.
“We found our purpose in life through our girls,” Allison added. “I never would have imagined, but this is what we are meant to do. We love helping other people, and we find our strength by trying to be that support for someone else.”
Hailey is a precocious, budding inventor who loves soccer, kitties and the TV game show “Minute to Win It.” She practices her soccer moves by blocking people coming in the door of All Children's, and wants to go horseback riding for her ninth birthday today. The twins' parents are constantly thinking a step ahead for their organization, while also finding things the girls can do together, from going to high school plays to hanging out at Yogurt Mountain. Family vacations like trips to Walt Disney World are too difficult.
Hailey has won numerous awards from the Pinellas County School Board for her efforts to find a cure for epilepsy and has become the spokesperson for Livy's Hope, articulating to large audiences how her sister has taught her “empathy.” But for Hailey, the true hero, and her best friend, will always be Livy.
“I love to cuddle with Livy a lot, and we even have our own handshake,” Hailey said. “I would show it to you, but there are moves you probably wouldn't understand. It's best friend kind of stuff.”