November is Epilepsy Awareness Month. It is a time to spread awareness, reduce misconceptions and advance causes which will lead to a cure for 3 million people across the United States and 65 million people around the world. 1 in 26 people will develop epilepsy over the course of their life. More than one-third of people with epilepsy continue to have seizures despite treatment. Livy is one of those people.
A person is considered to have epilepsy if they meet any of the following conditions:
At least two unprovoked (or reflex) seizures occurring greater than 24 hours apart.
One unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years
Livy's Hope is committed to creating more awareness and funding research that will lead to a cure. For more information about epilepsy, please visit the Epilepsy Foundation at www.epilepsy.com.
This past month, Kid President posted a new video called History of Awesome Girls. The purpose of the video is to show just how awesome girls are. Click here to watch. So what does this have to do with Livy's Hope you ask? Watch the video at the 1:53 mark. You may see a couple of cute, familiar faces. How exciting this was to be included with some of the most remarkable and renowned women!
We received the most adorable card in October from this little sweetheart, Lucy. Her family is long time friends of our family. She asked her mom (Danielle) if she could raise money for "Lemonade for Livy" for her birthday instead of receiving gifts. She raised $400 for epilepsy research! Her donation has increased the total for this year's campaign to over $36,000! We are so proud of Lucy and kids like her who want so much to be a part of something and to help make a difference. If you would like to contribute to Lemonade for Livy to support Epilepsy Awareness month or in honor of someone special, please click here.
Brendan McKernan - President & Kevin McKernan - Chief Scientific Office
Back in August, we mentioned that we had taken a trip to Courtagen Life Sciences in Woburn, MA. Courtagen is committed to helping physicians, families, and children suffering with neurological disorders. The company's test results provide doctors with genetic information to help diagnose disease and guide treatment decisions. Genetic testing can lead to positive changes or, in some cases, major improvements in a child’s quality of life. While we were there, we took a tour of the lab and interviewed the Courtagen team. The outcome was this informational video. It is our attempt to turn a complicated topic into simplistic, helpful information. Please click here to watch and learn more about what Courtagen is doing to make tremendous advancements in the field of genetics. Their testing is enabling doctors to better diagnose and treat children with neurological disorders.
From Allison: "I would never have understood or appreciated this quote had it not been for Livy. At this time eleven years ago, I was 6 months pregnant. We knew we were having twins, that they were both girls, and that one of them may have complications. At my 20 week ultrasound, the tech left the room and we knew something was wrong. The doctor came in to confirm that one of our babies, Twin B, had enlarged ventricles in her brain. The list of possibilities was long and Jon and I were terrified. We left the office that day and promised to tell no one until we knew for sure. That was the beginning of our struggle. Another part of our complicated, scary, unknown but beautiful story.
Every other week, we went for a follow-up ultrasound to see how Twin B was doing and if her ventricles were changing in size. At first, there was not much improvement but as the weeks went on, their size decreased and with that, our hopes rose. Just days before I delivered, we received the great news...her ventricles were now within a normal size! We were so relieved and walked into the hospital on delivery day with a huge weight off our shoulders.
At 6:38 am on December 15, 2004, our story changed once again. Olivia Hope was born and another chapter had begun. Looking back now I see how much more difficult things were for us in the beginning. The struggle was a monster and at times we felt we had lost control. But over time, this difficult road has led us to a beautiful destination. We have now come to the understanding that Livy's story, and the struggle that has come with it, has made us who we are. We would like to thank you for being a part of it."
ON SALE NOW in the Livy's Hope shop! In honor of Epilepsy Awareness month, Hailey will be donating a percentage of her sales to the Epilepsy Foundation of America to help fund research for a cure. Please click here to visit our Livy's Hope shop to view her entire collection of bracelets.