Last year, we attended the Walk and it was our first trip together as a family outside of Florida since 2007. We had some fun filming our journey and we are now bringing that to you in a five part series. Click here for Part 1: To the Train! and click here for Part 2: On the Right Track. The end of both parts read "To Be Continued..." Nothing could be more accurate because when people ask how Livy is doing, our answer is often, "Every day is different." That is our journey.
When we get Livy up in the morning, we are never sure where she will take us. In the past, on bad days, it has been a trip to the doctor, or to the pharmacy for medication or worst case, to the ER. She has led us up and down the east coast to hospitals traveling by car, helicopter, plane and even a private jet. This past year, we took a train to the National Walk for Epilepsy in DC which was a new form of transportation for us. We just aren't ready to put her back on a plane and risk the pressure change upsetting her delicate balance of seizure control.
Her personal journey is one of courage and determination. She often wakes up with the most beautiful smile as if having erased all that she has been through including surgeries, broken bones, a dislocated hip and more. We wonder, does she remember her past and how difficult it was? We think it is her love for life and her amazing strength that gets her through.
Our family's journey has been filled with great sadness, but also tremendous joy. It is true that we never know what tomorrow will bring. That is the case for any family. But for our family, dealing with the severity of Livy's epilepsy makes our lives much more uncertain.
However, we proudly take the journey each and every day. Livy doesn't give up so we don't either. We will never stop trying to help her and the millions of over families walking a similar path. We will not settle for the treatments of today, which don't help a third of people with epilepsy, when we know that new answers can be found.
We invite you to help us on our journey as we travel back to DC this year for the National Walk. Please consider making a donation to our Livy's Hope team or walking with us either in DC or by joining our team and being a virtual walker. When you contribute, you are supporting the mission of the Epilepsy Foundation which is to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
This journey will not stop for 65 million people around the world without your help. Thank you so much for your love and support!
Our first Community Action Network of Tampa Bay event was a great success! Everyone came out in purple for a picture and a picnic on Epilepsy Awareness Day on March 26th. We are so thankful for our family and friends who volunteer their time for this cause. The Community Action Network, created by the Epilepsy Foundation, is just the beginning of a movement that will change the perception of epilepsy and create more awareness for a disorder that affects 60,000 people in Tampa Bay. We look forward to holding more events in the future so we can bring the community together to inspire them and give them hope.
If you are interested in getting involved with the Community Action Network of Tampa Bay, please reach out to us.
We have some really cool news which we will reveal on April 16th. A little hint, the Epilepsy Foundation will be introducing a new, nationwide program for kids. Hailey has been asked to be a part of it and we are so excited for her! To many, the program may look a little familiar. We would like to extent a very big thank you to those who have been a part of Livy's Hope for the last several years and supported our efforts. But that is all we can tell you, for now:)
Another sweet example of "Don't Give Up. Give Back.™". Friends of our family have a little boy named Grant who had craniosynostosis surgery last September.
Craniosynostosis is a condition in which the sutures in the skull close prematurely, causing problems with normal brain and skull growth and premature closure of the fontanelles (soft spots). Premature closure of the sutures may also cause pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance.
For Grant's first birthday in March, the family collected pajamas or "Grant's Jams" to donate to Cranio Care Bears. The organization donates care packages to families of children that are facing surgery. When we last heard about them in the middle of March, they had already collected over 60 pairs to donate!
This family is a wonderful example of giving to others after going through a very stressful and difficult situation. We are so happy to say that Grant is doing great!
The journey of life is filled with both happiness and heartache. But it is what we do when all seems hopeless that defines our character.
Don't Give Up. Give Back.™
Thanks so much!
Jon, Allison, Hailey and Livy
To make sure you receive emails from Livy's Hope in your inbox, please add email@example.com to your email address book or contact list.