A lot has changed since this lemonade stand back in May of 2011. Hailey and Livy were only 6! They were so small. It was the first year for Lemonade For Livy and who knew what it would become over the next 5 years.
But many things have not changed. The other day, we read about a family who is in the hospital with their son. He is 4 and is having uncontrolled seizures. Many moms were commenting how they are in the same situation. Many families are still helpless to get control of this awful disorder. They sit at the bedside watching their children stiffen and shake. They watch the nurses come in and administer extra medication only to have their child start seizing again an hour later. They watch the doctors make medication adjustments in hopes of regaining control only to make more adjustments the following week.
The feeling of stress and emotional pain is incomprehensible if you have not been through it. We would compare it to a hundred pound weight sitting on your chest while at the same time, the pressure in your head becoming nearly unbearable. Seeing your child in that state is something no parent should have to endure.
But it is happening every day across the country and around the world. We just heard a new statistic that a person dies in the United States every 10 minutes from a seizure. That equates to 50,000 deaths per year! Families need new treatments. They need more options. They need hope.
Lemonade for Livy is a symbol of this struggle, where our family and others have been, and where many families are at this very moment. But it is also represents what families can do when we work together. It is an example of what dedication and commitment can accomplish.
In May, we held our first Lemonade for Livy stand of the season. We gathered at Safey Harbor Montessori Academy in Safety Harbor, FL. We had a wonderful turnout of family, friends and community supporters. In total, we raised just over $900!
Please join us for this year's campaign and help raise funding for the Epilepsy Foundation. With 1 in 26 developing epilepsy over their lifetime, 150,000 new cases diagnosed every year in the US, and 65 million people living with the disorder around the world, it is likely you know someone impacted by epilepsy. We need your help!
Lemonade For Livy is being spread around the world, too. Stands have been registered in Canada, India, and Australia! On recent trips overseas, Jon was making a stand in Italy and his mom and her partner Steve were making a stand in Scotland. 65 million people around the world live with epilepsy. Many are still at serious risk due to a lack of services and medications and from a misunderstanding of the disorder. We have heard terrible stories of how people are treated and the remedies that are used to try and treat the disorder. Much needs to be done to spread awareness and educate people about what epilepsy is and the impact it has on individuals and families.
Hailey has been busy with her new position as President and CEO of the Epilepsy Foundation Kids Crew. She mailed out the first set of member packs and is working on her second batch. She will be spending time this summer creating videos, educating, and speaking at various locations. We are so proud of her and all that she is doing to help the community!
She has a new video coming out very soon about the cool member kits that kids receive when they register. It includes a certificate, a lanyard, membership card, and a fun Kids Crew pin.
If your child is 14 or under and would like to join, go to epilepsy.com/kids-crew and complete the registration form. It is a wonderful way to get them involved, give back, and make a difference.
Livy was paired with Tracy back in July of 2013 for an organization called I Run 4 and it has been amazing since the start. The purpose is for a runner to be matched with a child with disabilities who is not able to run themselves. Tracy is dedicated and has always kept us informed when, where and how she is running for Livy. She even sends Livy medals from competitions! Tracy and her family have held Lemonade for Livy fundraisers and they support much of the work we do through Livy's Hope.
So when we saw this image, it brought us to tears. It had a profound impact on everything we know. Tracy has literally had Livy's name emblazoned on her, permanently. She is now a part of our family and of Livy's life forever. To us, it represents the meaning of hope and the farthest thing from being alone we can imagine which is how we used to feel at the beginning of Livy's journey. Tracy will wear the I Run 4 Livy moniker with pride every day knowing that she has changed a family and will be inspired by a little girl who gives hope to so many. When others see it and ask Tracy what it means, she will be able to share Livy's story and describe to people why they should never give up.
"When we love, we always strive to become better than we are. When we strive to become better than we are, everything around us becomes better too."
- Paulo Coelho
Don't Give Up. Give Back.™
Thanks so much!
Jon, Allison, Hailey and Livy
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