Having a child is a life-changing event. So imagine how much your life would change if you had twins. Now, imagine one of them was born with a disability. How would that change your life?
For one family in the Tampa Bay area, having twin daughters (one born with a major disability) has changed their lives in ways they could never imagine. “My daughters, Hailey and Olivia (Livy) will be 9 in December,” says Jon Scheinman. “Livy was born with epilepsy and cerebral palsy. Her first seizure occurred about an hour after she was born. She cannot walk or talk or even sit up on her own, but she has changed the lives of everyone she meets. She has a glowing, radiant smile that brightens even the darkest of rooms. She has undergone two major brain surgeries, a multitude of hospital visits, and numerous medications but is still one of the happiest kids I have ever seen.”
Raising children is challenging, but when you add therapy sessions and multiple visits to the doctor each month, it would be easy and understandable if simply “getting by” each day became the family’s main goal. However, the Scheinman family has made it their mission to help other families of children with epilepsy and disabilities; to educate people, and to fund research that will hopefully one day find a cure for epilepsy.
Jon says their family has been amazed to realize how much they can help other people and that they also enjoy being able to talk to other families about how to live life with a disabled child. “We originally started our organization called Livy's Hope to help raise money for Livy’s many expensive therapies. When it was clear that Livy's Hope could be so much more, we began using funds from anything we sold to help others as well. We deliver bracelets to girls in the hospital and provide Care Notebooks free of charge to families providing care for disabled children. The notebooks help parents keep the abundance of necessary information all in one organized place.”
Livy’s twin sister, Hailey, is one of her biggest supporters. She not only makes beautiful jewelry to support Livy’s Hope but also speaks at events about epilepsy and disabilities.
In June of this year, the Scheinman family launched Livy’s Hope For A Cure, a fundraising effort to raise money for the Epilepsy Foundation. Jon says, “After Livy's last hospital stay due to uncontrolled seizures, despite her earlier surgeries, we could no longer sit idly by. So, we set out to raise as much money as we could. We started by having lemonade stands in various locations (including one at the final game of Westchase’s kickball league in August). We also reached out to kids across the country. On July 27th, we had the first official Lemonade For Livy day and raised about $2,000.”
Now, the Scheinman family, with help from friends and supporters, are planning a much bigger special event at Ruth Eckerd Hall in Clearwater. Held on November 16 from 5 p.m. – 9 p.m., The Imagine A Cure: Willy Wonka Fundraiser will be a fun event for the whole family with various rooms decorated like the rooms from Willy Wonka’s chocolate factory. Pop Americana recording artist Carmen Magro, the singer and songwriter of “I Am Hope”, will entertain the crowd with his passionate music, and Fritzy the Entertainer will delight children with his antics as he plays the role of Willy Wonka. In addition to games and live entertainment, there will be mini-golf, face painting, a green screen photo booth, and a silent auction. All proceeds from the event will benefit the Epilepsy Foundation to fund research for a cure.
“Despite the rocky, emotional road our family has been through over the last eight years, we think it is so important to give back and to make a difference in the lives of others,” says Jon. “We have spent countless hours asking why Livy and our family has had to endure these incredibly difficult times. But, helping people in need and inspiring those without hope has provided a glimpse of an answer.”
You can get more information about Livy’s Hope and the Imagine A Cure fundraiser at www.LivysHope.com.