Published on January 18th, 2016
As her twin sister, Hailey, raises funds and awareness to battle epilepsy via Livy's Hope, 10-year-old Olivia Scheinman still suffers constant seizures, even after exhausting therapies and a lifetime of surgeries have left portions of her brain disconnected or even removed. And though Livy remains unable to communicate verbally with her sister and parents, her spirit shines brightly as a beacon for 65 million epilepsy patients worldwide - especially for the two thirds for whom the cause of their condition remains unknown.
Our goal: To raise $4,178 to purchase a Tobii EyeMobile Kit system for Livy, so that she can more expressively communicate with her family and develop her own "voice" for the first time in her life. Thank you to all our supporters who made this possible.
This is Livy's story
On December 15, 2004, Allison and John Scheinman welcomed their Hailey into the world after 12 hours of labor. After another hour, they welcomed Hailey's twin sister, Olivia, or "Livy" for short. Four hours later, after doctors had moved Livy to the Neonatal Intensive Care Unit after noticing her unusually fast eye movements, Jon witnessed his daughter's body shake, curl, and convulse in what would be the first of a lifetime's worth of Grand Mal seizures.
Hailey was walking by 11 months and talking up a storm by 15 months. But all these years later, Livy still has little control over her body and is unable to speak. She suffers from Multi-Focal partial Epilepsy and Cerebral Palsy, and has endured two massive brain operations. The first, in 2006, removed portions of two lobes in her brain. The second, in 2009, completely disconnected the left side of her brain because she was having more than 100 seizures in a day. This procedure is only done in extremely rare cases where all other forms of medication and treatment have failed to relieve severe seizures.
After this second surgery, Livy developed a terrible flu with a 104-degree fever; the seizures continued and have never stopped. And these are just the biggest procedures and surgeries. Livy's entire life has been non-stop hospital stays, rigorous physical therapy, and constant testing. But through it all, Livy has made strides that should be absolutely impossible. And the reason for that is undoubtedly the bond she shares with her twin sister, Hailey.
Hailey began making jewelry and selling artwork, headbands, and lemonade to raise money for her sister's expensive therapies, which aren't always covered by the family's insurance. Today, Hailey continues to find new ways to help no only her sister but to raise funds and awareness to battle epilepsy in all its forms. Her website is called Livy's Hope (livyshope.com). On our November 13, 2013 episode of Peace Fund Radio, Adrian first shared the story of Hailey and Olivia Scheinman. And on June 8, 2014, Hailey called in to the show to let kids know how to participate in Livy's Hope's Lemonade for Livy campaign. 100% of the profits from all items sold on the site go to awareness and fundraising for epilepsy causes.
Livy does not have purposeful use of her hands and cannot walk. She requires interventions such as occupational, physical, and speech therapy on a regular basis to improve and maintain function, although she will never be capable of independent living.
Livy is also not able to communicate verbally. She does have the potential to communicate through an augmentative device such as Eye Gaze technology, which combines hardware and software that would allow Livy to use her eyes to make selections on a computer.
With the Total EyeMobile Kit, Livy can now learn to express her own voice. This equipment allow's Livy to develop to the best of her cognitive and medical ability. It also allows Jon, Allison, Hailey and all of Livy's teachers and caregivers to understand and meet even her most basic of needs. This is a device that Livy could utilize for years to come.
