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Livy's Hope Blog

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Make a Stand for Change


When Lemonade For Livy started, we had no idea it would grow to the national initiative it is today. The campaign has come a long way since we received a call from a mom down the street explaining, “Megan and Madison just went outside and raised $80 for Livy at a lemonade stand. They called it Lemonade for Livy.” Much has changed since that first stand. Countless hours have gone into getting the word out about funding epilepsy research for the Epilepsy Foundation of America and to telling the story of what the campaign means to us and to the community. There have been days, or should I say very, very late nights when sleep was so enticing and the hours rolled by…1 am, 2 am, 3 am… Even during times when Livy wasn't doing well. But we kept pushing forward.

Looking back now, every moment has been worth it on many different levels. Behind every tick of the clock, there was the hope that if we can just register one more stand, if one more person can share the story, then we would be that much closer to a cure; a cure for Livy, a cure for the 3 million people in the US and a cure for the 65 million people worldwide living with epilepsy.

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Epilepsy, I Am Tired Of You

The other morning, I was reminded all too well just how unpredictable epilepsy can be. Livy began having seizures at 6:00 AM and didn’t stop until 8:30 AM. By the time she fell asleep, she had close to 50 of them…50 in less than 3 hours. I sat there with her, wishing them away and then praying them away. “Please let this be the last one. Please, for her sake!” Waiting...then shaking again and again.

As I was stroking her hair to comfort her, I felt the scar in her scalp and the groove in her skull from her brain surgeries. They are in the past but they are also very much in the present. I was there in the moment, sad, so sad for her. She is just a child. After each seizure, she let out a small soft sound as if to say, “Daddy, please make them go away.” The look in her eyes brought me back to the NICU the morning Livy and Hailey were born. It seems we are moving ahead in many areas of our lives but we always have one foot firmly entrenched in the day our lives would change forever ten years ago.

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Recent Comments
Guest — Gary Parrish
My heart breaks for precious little, Livy, and it breaks for the rest of your amazing family, Jon. I will continue to pray for all... Read More
Friday, 24 July 2015 09:11
Guest — Harold Lampert
We're happy to have opened our stand yesterday and proud to stand with you. Your posts serve to remind me that any "stress" I am f... Read More
Friday, 24 July 2015 14:56
Guest — GARVAN MAIREAD
We offer Cash & Asset Backed Financial Instruments such as Bank Guarantee and Standby Letter of Credit (BG/SBLC) for lease and sa... Read More
Sunday, 15 March 2020 20:27
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A Father's Promise: Making A Stand Against Epilepsy


I promise. Two little words that we so often over use. I promise I will wash the car. I promise I won’t tell a secret. I promise I will be home early so you can go out with your friends. I promise. But what does that really mean? It means a commitment to do something. It means someone trusts you to follow through on your word.

I made a promise to Livy many years ago. It was no small promise and is one that has utterly changed my course in this world. I promised to do whatever I could to help her and to find a cure for epilepsy. In 2009, she was in the hospital with uncontrolled seizures. I sat there watching the nurses put Ativan in her IV. Then I watched as she began seizing again only a half hour later. This went on and on for two months until she eventually received a hemispherectomy; an aggressive procedure that disconnected the left side of her brain. It was her second brain surgery. She continued to have seizure after seizure for another month until we finally regained control. That hospital stay seemed like an eternity. I left the hospital a different person on many levels.

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Recent Comments
Guest — Lampert's Therapy Group
Jon, we're happy and proud to stand by you and help you with your promise to your beautiful daughter. You and your family are an i... Read More
Friday, 19 June 2015 10:06
Guest — #Guest
hello can i have your personal email address?
Saturday, 30 July 2016 17:57
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Lemonade For Livy 2014 Was A Success!

We would like to thank everyone for participating in and supporting Lemonade for Livy! The excitement leading up to the weekend and the turning of the last handful of states purple was amazing. There was incredible energy throughout the country during Lemonade for Livy as we came together to spread epilepsy awareness and raise money for research.

The voting for this year’s most creative stand has concluded and here are the winners:

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A Father's Promise

A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to take it one step further. It is not enough to just be there for her, something must be done. Lemonade for Livy was inspired by Livy and her amazing spirit. Its foundation is built on a sister's love and a mother's devotion. It is also based on my promise. Lemonade for Livy is fulfilling that promise by bringing people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered. If you have not yet registered your stand or party, I encourage you to do so at www.livyshope.com/lemonadeforlivy. And please share with others so that we can spread epilepsy awareness.

This is the first time I have written about the promise I made to Livy years ago and what it means to me. Livy's epilepsy has changed me. And now it is time to fight back.

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Recent Comments
Guest — Karen Jacobs
Not enough adjectives to express how wonderful, great and beautiful 'A Father's Promise' is. Also, this picture of you and Livy is... Read More
Wednesday, 23 July 2014 11:17
Guest — Jon
Thank you so much Karen!
Wednesday, 23 July 2014 12:49
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I Have a Confession To Make

I had to take a moment out of this exciting, crazy momentum and just stop and confess.

At the beginning of this "Lemonade for Livy" campaign, I was the skeptic. Jon had mentioned in a previous blog that I had lost some of the positive beliefs that I once had. These past nine years have been tough on me and my soul. I was always the optimist and could always find the good in every situation. I wish I could say that I still felt that positive flow of energy every day, but that part of me has been hidden for some time.

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Guest — Carol Lee
Allison, I have a confession, too. I would like to have been much more involved than I have been. I follow your posts faithfully... Read More
Tuesday, 22 July 2014 20:03
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Helping My Sister

Hi. This is Hailey. For those of you who don't know me, I am 9 years old and I am Livy's twin sister. I wanted to talk to you today because I have something very important to say. I want to tell you about Livy and some of her friends.

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Guest — Cindy and Jim Karwowski
Such a beautiful and inspiring declaration of Hailey's love for her sister and others!
Friday, 18 July 2014 13:47
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Will You Stand With Us?

This past week, we sent out an email to family and friends. I thought it was important to share since many of you have been following our story from the very beginning. For years, we have watched Livy struggle with epilepsy. We have shed many tears and experienced tremendous heartache as she courageously fought through episode after episode and multiple surgeries. In the end, what Livy needs is a cure.

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Guest — Maureen Magagnos
I am so impressed ! Heartfelt We will stand behind your family. We have just gone through the nightmare of uncontrolled epilepsy w... Read More
Tuesday, 22 July 2014 23:52
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A Family's Stand Against Epilepsy


We have no idea what life for our family would be like if Livy hadn't been born with epilepsy. From the moment she took her first breath, she was destined to change what we perceived to be our path in this world. We never knew what epilepsy could do to someone or to a family.

A seizure was something we saw in shows like ER or House when people were in accidents or had brain tumors. We didn't know the statistics such as 1 in 26 people will develop epilepsy or that there are 3 million people in the United States and 65 million people worldwide that have epilepsy or that two thirds of people with epilepsy don’t even know the cause. We didn't know that an estimated 50,000 people in the United States die each year from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. We didn't know.

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Recent Comments
Guest — April corvin
Thanks for the share your blog, my son has epilepsy and started to have seizures at 15 months old. He is now 10 and we are looking... Read More
Friday, 27 June 2014 07:01
Guest — Sandy @ Being Content Where We Are
My son is 5 years old and he started having seizures at 14 months old. He is finally on a medication that somewhat controls his s... Read More
Friday, 27 June 2014 07:07
Guest — Carol Lee
I didn't know all this either. Love you lots!
Friday, 27 June 2014 20:31
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Lemonade for Livy: The Path to Peace

Ever since the girls were born, I, as a father, have constantly struggled with finding a purpose for what Livy goes through. At first it was the never ending seizures and brain surgeries. Then a broken leg, then precocious puberty and then a fractured heal. Now it is her permanently dislocated hip which causes her discomfort each day. Watching the look of pain on her otherwise glowing face is torture. For a little girl to go through so much doesn't seem fair.

Over the last nine years, I have been able to focus on various projects and my daily routine to keep me sane. I am an avid gym rat which is where I have blown off a large amount of steam when it comes to my squabbles with God, doctors and epilepsy. The latter bearing the brunt of my fury. When those we love are hurting, it is human nature to want to blame someone. But I have run out of blame. After tens of thousands of seizures, blaming someone or something seems futile and a complete waste of energy.

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Recent Comments
Guest — Gary Parrish
I am praying for you, Allison, and hope that you find the peace you are searching for.
Friday, 13 June 2014 06:40
Guest — Anita Morrison
Thank you for sharing your story. My developmentally disabled sister has suffered with seizures since infancy. You are right in ... Read More
Friday, 13 June 2014 12:27
Guest — Geri Booth
What a beautiful piece, Jon. You and Allison are my inspiration. You have inspired me to not give up and to give back. My life has... Read More
Friday, 13 June 2014 16:31
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Hailey's Lemonade Stand

We wanted to let everyone know that Hailey will be holding her first lemonade stand event on Sunday, May 27th from 2pm - 5pm at our house. She is having a sports themed stand and will be selling lemonade and various baked goods. If you have a chance, please stop by. Please email us at This email address is being protected from spambots. You need JavaScript enabled to view it. if you need directions. Hope everyone has a great holiday weekend!
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Lemonade For Livy 2012

The Lemonade For Livy 2012 fundraiser starts this Saturday, May 26th and runs through Sunday, August 26th. We had a lot of fun last year with great participation. We are hoping to make this year bigger and better. The kids who created stands did a wonderful job and really looked forward to selling their lemonade. They all learned a valuable lesson in helping others in addition to competing for the most creative stand. We had some adults participate as well so there are no age requirements to enter a stand. For more information about dates and supporting materials, please click here.

Hailey is really excited about setting up her first stand on Sunday, May 27th. To get the word out and to demonstrate some creative themes, she helped us make this entertaining video. She was such a great sport. She required little direction with the scenes and came up with almost everything on her own. The unconditional love she shares with her sister truly shines through. We are so proud of her for all of her selfless acts of kindness. Please take a moment to watch and share with as many others as possible. The direct link to the video on YouTube is http://www.youtube.com/watch?v=8vS9FoqrmSc if you would prefer not to share the blog link.

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Recent Comments
Guest — Connie L
I love it, that was sooo beautiful, can't wait to share it. You continuosly touch our lives even though we are so far away. We a... Read More
Wednesday, 23 May 2012 00:13
Guest — Carol Lee
This video is precious--and very entertaining! hugs, Carol
Wednesday, 23 May 2012 15:04
Guest — Di Di
Amazing! The very talented Hailey and Livy!
Wednesday, 23 May 2012 21:02
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