Happy Holidays from Livy's Hope. Wishing you and your families a safe, healthy and joyous holiday season.
We are thrilled to announce that Jon will be joining the Epilepsy Foundation of America team! He will be leading a new initiative across the United States to mobilize and bring communities together, spread awareness, educate, advocate and fund research. Our family is so excited to work closely with the foundation and to support Jon in his new position.
From Jon: "For the past three years, I have been dedicating my time to helping others who have given to us. Livy's Hope started as a way for us to share Livy's story and raise money for her intensive therapy sessions. But it turned into so much more. We have had the privilege of working with amazing families and organizations to give back to the community. We have spent countless hours raising epilepsy awareness and funding for research through our initiatives "Livy's Hope for a Cure" and "Lemonade for Livy".
I have come to a point where I can no longer watch our children, mothers and fathers, sisters and brothers, friends and all others struggling with epilepsy and not do more. I have often said that having the opportunity to work full time in communities to advance the understanding of epilepsy, organize initiatives and create funding for new therapies is the way I want to spend my life. The Epilepsy Foundation is giving me the chance I have dreamed about for years. I would like to thank Phil Gattone, CEO of the foundation, for his leadership, vision and commitment to a world without seizures. Together, I know we will change the perception of epilepsy and be relentless in our efforts to find a cure.
I made a promise to Livy many years ago that I would fight for her and always be there for her. Now, I make the same promise to the epilepsy community. I promise that I will work non stop to help you and your families. I will tell your stories. I will do everything in my power to find answers. I will make it my life's work to find a cure. I am motivated, passionate and driven. I will stand up for our community and our families because the time has come for change. I will push as far as I need to because we deserve more options. I will not give up and I will never give in. This is my promise to you.
All I ask in return is that you consider joining us so we can speak with one voice and let our collective message be heard. Help us build the Community Action Network (CAN) to get people involved, share ideas and make a difference in people's lives across the country. We are stronger when we use our talents to work together and I am confident that with perseverance, commitment and hope, we will advance farther than ever before."
It is said that Disney is the most wonderful place on earth. On November 4th and 5th, it was just that for the Epilepsy Community. People from around the United States converged on Anaheim, CA for Epilepsy Awareness Day Disneyland. The event was founded by Brad, Candy and Sofie Levy and is now in its third year. Sofie, the Levy’s daughter, developed epilepsy and had successful brain surgery six years ago. The Levy’s are committed to helping others with the disorder and to spreading awareness.
Families started on Wednesday by attending the informational expo and interacting with epilepsy and seizure focused organizations, hospitals and companies. There was also a full schedule of sessions discussing topics such as research, types of treatments, SUDEP (Sudden Unexpected Death in Epilepsy), diet and EEGs. Jon was honored to present during the Families Fighting Back session.
During the expo, Jon spoke with many families and discussed their experiences with epilepsy. Some have just started their journeys and some have been traveling down the path for many years. But the story was the same. We need more information about epilepsy, more awareness and better treatments. We couldn’t agree more.
Then on Thursday, it was time to visit the most famous mouse in the world. The group gathered at the entrance to Disneyland for the first in a series of three pictures. It was amazing to see so many dressed in purple coming together for the pictures in a show of support for each other and the millions of who could not be there. We have always believed and continue to feel that when dedicated and driven families come together to be a part of something meaningful and purposeful, anything can be accomplished. Epilepsy Awareness Day 2016 is scheduled for November 2 - 3.
The Livy's Hope Kids Crew supported the children's early intervention program of the Lighthouse of Pinellas in November. The Early Intervention program is designed to enhance early childhood development for children, age birth to six, who are blind or visually impaired.
At our meeting, Kristen and Cathy from the Lighthouse spoke with the crew about the services they offer. They had the kids try simulations while blindfolded including putting toothpaste on a toothbrush and pouring a glass of water. The kids were able to get an understanding of the challenges other children face who are blind or visually impaired. They also typed on a brailler and spelled their names in braille using M&Ms. It was a fantastic learning experience!
The crew has been fundraising to purchase holiday gifts to give to the children who receive services from the Lighthouse. They will be sponsoring 22 children this year.
Thank you to Kristen and Cathy for teaching our crew very important information about their work and the children they help. For more information, please visit: www.lighthouseofpinellas.org.
It's hard to believe that Hailey and Livy are turning eleven this month. Looking back at these photos of our little Livy is difficult. But, it is important to remember what she has gone through. Epilepsy has taken so much from her starting from her very first day of life. She had countless blood tests, CT scans, MRIs, lumbar punctures and EEGs not to mention two brain surgeries including a functional hemispherectomy which disconnected the left side of her brain. Both times, her little head blew up to the size of a grapefruit filled with fluid. She spent endless months in the hospital drugged so much she could no longer hold up her head. Her little hands and feet were riddled with puncture marks from needles and IVs to a point where nurses could no longer find veins. Her body carries the scars of a muscle biopsy, a g-tube placement, a port in her chest, a shunt that leads out of her skull and down her body. The incredible amount of anti-seizure medications put into her body and has been astounding.
But she has been fighting now for almost eleven years and has never stopped. She has beat the odds on numerous occasions when it seemed there was no way she could do so. She has inspired people around the world and given them hope. Her smile is pure joy. For our little warrior, Livy, we stand with you now and forever.
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