Our daughter Olivia (Livy) Hope and her twin sister Hailey were born in December of 2004. Livy was born with a brain malformation that resulted in epilepsy, cerebral palsy, and other disabilities. Livy’s first seizure occurred only hours after birth. She spent the first nine months of her life at All Children’s Hospital in St. Petersburg, Boston Children’s Hospital, and the Suncoast Hospice House in Largo, FL. She finally came home to us in September of 2005.
Throughout Livy’s life, we have been tested physically and emotionally. Livy has undergone two major brain surgeries to try and alleviate her seizures. She has had many hospital visits due to uncontrolled epilepsy, broken bones and other various medical issues. She is not able to walk or talk and she is completely reliant on her family for care. What we find amazing is that despite all she has been through, she is one of the happiest little girls we have ever seen. Her smile radiates love and she welcomes everyone she meets with a warm, glowing demeanor. Click here to see Livy’s story.
Hailey has learned more from Livy than we could ever teach her. We are constantly worried that Hailey will resent the fact that she didn’t have a typical childhood filled with loud parties, long family vacations and other things kids usually do. Livy has created a new normal for our whole family. But when we ask Hailey if she misses certain activities, she says she wouldn’t have it any other way. She is more empathetic and compassionate than we ever could have hoped and leads much of what we do as an organization.
Livy and Hailey were the inspiration for the creation of Livy’s Hope. Hailey states, “I heard my mom and dad talking about how to raise money for Livy’s expensive physical therapies. So I told them that I wanted to help, too.” Hailey immediately started making bracelets and painting pictures that she auctioned on eBay. It seemed every day she was putting together a new creation and always said she would do anything to help Livy. It is a beautiful story of the love and dedication shared between sisters.
As time went on, we decided to use the money we made through the sales of products to start initiatives as well as support charities that played a role in helping our family. We created Lemonade for Livy and the Kids Crew as ways to give back. Both are now national campaigns managed by the Epilepsy Foundation. Lemonade for Livy is an awareness and fundraising effort and the Kids Crew focuses on empowering kids to learn about epilepsy, create epilepsy awareness, educate and inspire others, and give back to the community. We have also supported a number of additional local non-profits. Click here to see more about the initiatives we have started.
As the Livy’s Hope community grows, we look forward to increasing the ways in which we can make an impact. Our motto is “Don’t Give Up. Give Back.” It is at the core of who we are and our perspective of what life is all about. It means to persevere in the hardest of times…never give up hope. If you find yourself in a place where you think you may be losing hope, give to others. It takes the focus off yourself and helps people in need. If you want to be inspired, if you want to feel less alone, if you are looking for hope, if you need motivation to make giving a part of your life, Livy’s Hope is a place you can call home.