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.
We are now deeply intimate with all that epilepsy is and the devastating effects it can have on individuals and families. When we hear stories of our friends or those outside of our circle whose children are in the hospital because of uncontrolled seizures, our hearts break because we have been there and are all too familiar with the intense feelings of helplessness and isolation. There are many different levels of severity in epilepsy and we have seen the worst.
We have no idea what is like to have twins that run and jump, ride bikes or play dress up together. We're not sure how it feels to go to Disney or a restaurant or a movie as a family without worrying if it is too loud or if we brought the right medications. The last time the four of us flew on a plane as a family was nine years ago when we traveled back from Boston Children’s Hospital. The girls were five months old and Livy had already been to three hospitals. Life is full of surprises and we suppose that when each of us gets up in the morning, we never really know how our lives will change.
What we do know is that we were given an incredible gift that has inspired our family to do something special and that we will not let epilepsy beat us. What we do know is if people across the country work as one, if we speak with a unified voice, we can make significant progress toward finding a cure. What we do know is that we will fight for the millions of epilepsy warriors and their families who desperately need relief from the disorder. What we do know is that our family is ready to make a stand and show that hope is stronger than epilepsy.
If you know someone with epilepsy, please share this blog and video with them. We want them to know that they are not alone and that our family will continue to do all we can to spread awareness and raise funding to find a cure. To learn more about how you too can make a stand against epilepsy, please visit our Lemonade for Livy page. The official weekend is July 25 - 27. We are trying to turn the entire country purple.
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 at possible brain surgery at the children's hospital of Philadelphia. He has been on about 8 different meds over the years and he is still having seizures.
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 seizures. Thank you for sharing your story. I found you at the Love that Max link up but will now be following along. Praying that today is a great day for your family.
Thank you for sharing about epilepsy. My younger sister has suffered with seizures since birth. She was born in the 1960's and I have seen the effect that lifelong seizures have had on her. She is on high doses of multiple medications. Thank you for all you and your family do to raise awareness of epilepsy and to help find cure. I am always interested in stories on the news about different things people try to control seizures. I read recently about a family in England that put their child on a ketogenic diet to control his seizures. I also read about the use of marijuana oil in controlling seizures. As a sibling of a person with special needs and seizures, I would do anything to help her. Please keep writing and sharing your inspiring story.