Livy's Hope For A Cure

It’s 8:00 on the morning of December 15, 2004. I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg. I am haggard with red eyes and a dazed, confused look about me. This should be the happiest day of my life. I am a first time dad. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy) only 4 hours earlier. Instead, tears of grief, not joy, stream down my cheeks. I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. We would later be told by a doctor that she may not live to be a year old.

After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were asked if we had considered a DNR (do not resuscitate). Livy’s condition worsened so we baptized her in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia (a brain malformation). Remarkably, three months later and with Livy subdued on five anti-seizure medications, we flew back to Florida to All Children’s while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both physically and emotionally to care for such a medically complicated child.

Livy resided in the hospice house for four months. It was surreal to have a perfectly healthy, thriving baby at home and to have the other fighting for her life. We were living two very different worlds, torn apart by both the known and the unknown. Would our little girl survive? What kind of existence would she have? How would she fit into our cookie cutter life filled with typical expectations and dreams?

Livy was finally stable enough to come home in September of 2005. The bedroom designed for two at last had its second occupant. As we watched them sleep in their cribs only a few feet apart, we basked in the glory of the moment, pushing away the nagging tentacles that told us our lives were going to be much different than we had planned.

Epilepsy was Livy’s worst enemy. Over time, her seizures became more frequent surpassing one hundred per day. In March of 2006, Livy underwent her first of two brain surgeries. For six months, she was seizure free. But then, her seizures returned in earnest. During her second surgery, she underwent a very rare surgical procedure called a functional hemispherectomy where one half of the brain is disconnected. For Livy, this was especially risky because both sides of her brain had malformations but her left side appeared to be much worse. She spent three months in the hospital during which time she recovered from a severe flu and weeks of post operative seizures.

We took our baby home not knowing what to expect. Allison and I were like two soldiers coming back from a war zone. Three months of staying in a hospital and watching our child suffer through weeks of viscous convulsions pre and post surgery left us both exhausted, defeated and in emotional turmoil. Our only solace came from the spirit of our little girls; one who had just been to hell and back but somehow still managed to smile at every chance she got and her sister, Hailey, who regularly provided comic relief from the gravity of the situation.

If I was asked at that point what I expected from life, I would have questioned how the joke ends. How could life be so cruel to a child and give her such a small chance to live a normal life? The odds were against all of us as at that point. If I was asked the same question today, I would answer in an entirely different fashion.

Since Livy’s second surgery, she has vastly improved. However, she still has many disabilities due to her brain malformation including her persistent epilepsy as well as CP (cerebral palsy). She is not able to talk, walk or crawl, and is completely reliant on her family for care. It took many years and soul searching to realize how blessed we were. She gave Allison and me a new perspective and transformed us in countless ways. She served as the example of strength that encouraged us to become the people we never thought we could be, not because of her disabilities but because she inspired us with her sheer will, her pure heart and her magnificent smile.

Livy has had a tremendous impact on her sister as well. Hailey is growing up in a very different environment than Allison and I did when we were her age. Medical supplies overflow from our closets and Livy’s equipment fills the corners of various rooms. A nurse comes monthly to check Livy’s blood levels since she is fed from a tube in her stomach and has a precisely managed diet of Pediasure and supplements. During breaks from school, Hailey often goes to Livy’s physical therapy sessions where she encourages the kids who attend. She has visited Livy during hospital stays on numerous occasions. But when we ask Hailey if it bothers her, she says she wouldn’t want it any other way. She deeply loves and respects Livy and is one of her most ardent, proudest supporters and advocates, presenting Livy’s story to classmates, at conferences and at events.

Life it seems is a continuous search for something meaningful. Becoming parents was supposed to facilitate that pursuit. Hailey and Olivia have done so much more. They have touched people far and wide and have given us true meaning and a purpose in helping others. They have taught us that it is okay to possess different dreams in a society that raises its citizens to conform. They have assisted us in choosing a path of service no matter how hard it may be.

When I look in the mirror today, I often think back to the individual I was the morning the girls were born. My eyes now tell a different story; one of dedication and determination. They are filled with hope and inspiration. When I cry, the tears are streams of pride and an unwavering commitment to a family completing an amazing life’s work.

The events of the past eight years have brought us to a turning point from which we can never turn back. Livy’s Hope embodies our spirit and everything we have learned from our experiences. We are driven to make a difference in the lives of others. The days of sitting helplessly at Livy’s bedside in the hospital watching her have seizure after seizure were lonely and bleak. But from darkness, the drive to do something meaningful for Livy and those living with epilepsy was constantly building. After Livy’s last bout with seizures a few months ago, I could physically take no more. I told Allison that we needed to do something big that will bring people together to take a stand against this terrible disorder. Our initiative called Livy’s Hope For A Cure was born.

Livy’s Hope For A Cure, starting on June 1st, is a campaign created to raise $1 million for the Epilepsy Foundation to support them in their mission to stop seizures and SUDEP (Sudden Unexplained Death in Epilepsy), find a cure and overcome the challenges created by epilepsy. The video you see here was filmed over a weekend and includes Hailey and Livy’s friends. They are a group of 2nd and 3rd graders who have worked as a team to do something special. Please watch it and share it with as many as you can.

We will be doing a lot over the next six months to reach our goal. We ask that you please join us in Livy’s Hope For A Cure so the 65 million people who have epilepsy and their families can live in peace.

As Hailey says, “There is hope in each of us. It only takes one person to change the world.”

If you would like to participate in our campaign as an individual, become a captain or have any other questions, please contact us or click here for more details.

Thanks for reading!

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Comments 4

Guest - Harold Lampert on Friday, 31 May 2013 11:42

Beautiful video; you guys are amazing!

Beautiful video; you guys are amazing!
Guest - Carol on Saturday, 01 June 2013 09:55

Jon, I'm sure I won't be the first one to suggest you write a book. You are gifted... I'd like to buy a campaign t-shirt but didn't see it here. hugs,

Jon, I'm sure I won't be the first one to suggest you write a book. You are gifted... I'd like to buy a campaign t-shirt but didn't see it here. hugs,
Guest - Carol on Saturday, 01 June 2013 09:55

Oops! Just found the shirt--hugs,

Oops! Just found the shirt--hugs,
Guest - Lisa on Saturday, 22 June 2013 08:50

My son has a similar story....your words describe everything I have trying to say. Thank-you

My son has a similar story....your words describe everything I have trying to say. Thank-you
Saturday, 05 December 2020

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