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Epilepsy, I Am Tired Of You

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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.

As we start Lemonade for Livy weekend and continue to turn states and countries purple and add lemons to our maps when people register, it often feels exciting, almost like a game. But I assure you, it is incredibly serious. 10's of millions of families go through the same thing. They witness their children having seizure after seizure and they feel helpless. Millions more adults with seizures struggle to live the lives they want to lead.

We were recently touched by a death in the epilepsy family. The disorder has taken another beautiful soul from this world. We did not know Soror Amber Pratcher, but she is now a part of Lemonade for Livy. Amber passed away just 4 days ago on July 20th due to epilepsy. A fundraising page under Lemonade for Livy was created in her honor which is how her passing was brought to our attention. We are deeply saddened whenever we hear that epilepsy has stolen another life and left a tremendous void in return.

For those families and individuals and in honor of Amber, we are here fighting and will not stop. We have seen enough and can no longer accept the status quo.

Lemonade for Livy is about hope and inspiring people to do something for others. But it is also about fear, uncertainty, anger and stress. All of the emotions that arise when dealing with seizures. I am tired. I am tired of watching my daughter live her life complicated with epilepsy and all that goes with it. I am tired of the emotional drain. I am tired of putting on a smile and telling people things are okay. They are not. How can this be normal? We tell ourselves it is normal because we have to watch Livy constantly go through it. It is our defense mechanism. Some days are worse than others and we are reminded how fragile life truly is.

Most of all, I am tired that not enough is being invested to find answers. The epilepsy community is 65 million strong and has millions more family members and friends to support them. Together we can make a real difference. Please don't wait for someone else to do this for you. Get involved today. That choice is one that you control.

To participate in Lemonade for Livy, please click here for more information and to register.

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Comments 5

Guest - Gary Parrish on Friday, 24 July 2015 09:11

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 of you.

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 of you.
Guest - Harold Lampert on Friday, 24 July 2015 14:56

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 feeling is inconsequential compared to what you go through.
God Bless

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 feeling is inconsequential compared to what you go through. God Bless
Guest - kim park on Thursday, 13 July 2017 01:48

THANKS TO DR EWOIG FOR CURING MY SON
My son has partial epilepsy for the past 18 years. Dr's have tried various means but he has seizures almost every month. The first epileptic occurred when he was five years old. i took him to a specialist who subscribed anti-epileptic medication. From then on he had to take four capsules per day, but most of the time he had seizures until I got to know about Dr.ewoig product to cure epilepsy. we order for the product, now i can tell you my son is now living a better life thanks to dr ewoig His herbal remedy is the only permanent solution to Seizure. You can always contact him through his email for more information(drewoig18@gmail.com)

THANKS TO DR EWOIG FOR CURING MY SON My son has partial epilepsy for the past 18 years. Dr's have tried various means but he has seizures almost every month. The first epileptic occurred when he was five years old. i took him to a specialist who subscribed anti-epileptic medication. From then on he had to take four capsules per day, but most of the time he had seizures until I got to know about Dr.ewoig product to cure epilepsy. we order for the product, now i can tell you my son is now living a better life thanks to dr ewoig His herbal remedy is the only permanent solution to Seizure. You can always contact him through his email for more information(drewoig18@gmail.com)
Guest - sophie on Saturday, 19 August 2017 20:21

WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.

I am Sophie from Canada, my son have been a patient of seizure . he do have the attack two to three times a week, which has really affected his education and his life., I had tried a lot of anti viral medicine prescribed to me by doctors over many years now; but I could not see any improvements in my son's symptoms. One day while going through the internet ,
i got to know about this great Herbal Doctor who uses his herbal remedies in curing people from epilepsy,quickly i
contacted him and he he made me to know that the medication is a permanent cure, so i was interested,and he prepared a herbal medication for my son, which i received and he used it as instructed by dr williams. After two months the
improvement were very visible. the sleepiness and the abnormal behavior stopped, my son is so full of life now and there
no more no sign of seizure in him again. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,
I would recommend this to all my friends,families,around the globe suffering from epilepsy.you can contact him through
his email on for advice and for his product,this is his email: doctorwilliams506@gmail.com , THANKS TO YOU ONCE AGAIN DR WILLIAMS

WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES. I am Sophie from Canada, my son have been a patient of seizure . he do have the attack two to three times a week, which has really affected his education and his life., I had tried a lot of anti viral medicine prescribed to me by doctors over many years now; but I could not see any improvements in my son's symptoms. One day while going through the internet , i got to know about this great Herbal Doctor who uses his herbal remedies in curing people from epilepsy,quickly i contacted him and he he made me to know that the medication is a permanent cure, so i was interested,and he prepared a herbal medication for my son, which i received and he used it as instructed by dr williams. After two months the improvement were very visible. the sleepiness and the abnormal behavior stopped, my son is so full of life now and there no more no sign of seizure in him again. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now, I would recommend this to all my friends,families,around the globe suffering from epilepsy.you can contact him through his email on for advice and for his product,this is his email: doctorwilliams506@gmail.com , THANKS TO YOU ONCE AGAIN DR WILLIAMS
Guest - nancy on Wednesday, 25 October 2017 08:12

My son started having seizures he had his first seizure at 6 year within 12 hours We spent 6 days in the hospital where different doctors looking at different things couldn’t agree on why he suffered a seizure… He has had genetic tests including a muscle biopsy. I used to wonder why my son were getting so many vaccinations shots at such a young age, Still the doctors wouldn’t admit it was the vaccination shots. After his 2nd seizure I wouldn’t allow my son to be vaccinated anymore but I believe the damage is done. It was during a casual conversation with a friend that I learned about Doctor Lawson Bryan i was so glad to know him on how his herbal product work, I contacted Lawson and explain everything to him and make purchase of his product. few days later i received the herbal medicine my son used it for 3 mouths i notice improvement in less than a month my son was totally cured of seizure now he have not experience any sign of seizure. Contact doctor Lawson Bryan on this + 1 (979) 475-5130 or e-mail dr.lawson52@gmail.com.

My son started having seizures he had his first seizure at 6 year within 12 hours We spent 6 days in the hospital where different doctors looking at different things couldn’t agree on why he suffered a seizure… He has had genetic tests including a muscle biopsy. I used to wonder why my son were getting so many vaccinations shots at such a young age, Still the doctors wouldn’t admit it was the vaccination shots. After his 2nd seizure I wouldn’t allow my son to be vaccinated anymore but I believe the damage is done. It was during a casual conversation with a friend that I learned about Doctor Lawson Bryan i was so glad to know him on how his herbal product work, I contacted Lawson and explain everything to him and make purchase of his product. few days later i received the herbal medicine my son used it for 3 mouths i notice improvement in less than a month my son was totally cured of seizure now he have not experience any sign of seizure. Contact doctor Lawson Bryan on this + 1 (979) 475-5130 or e-mail dr.lawson52@gmail.com.
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Saturday, 25 November 2017

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