For three chaotic, heartbreaking years, I watched my once-healthy daughter, Lillie, spiral downward into a mere shell of the vibrant, athletic, energetic person that she had always been. She was in sports, played the drums and piano, was a member of multiple school clubs, and was an active volunteer within our church. And she was a straight-A student with an impeccable memory, with aspirations to become a pediatric oncologist. I was so hopeful for her future, and so proud of my sweet, responsible girl. But everything changed a few months after she turned 15, during her sophomore year.
Lillie had surgery on her ankle after a volleyball injury in 2016 and immediately after that surgery, she began having seizures. The epilepsy diagnosis was a shock, because it does not run in the family. Once she began taking the prescribed medication, Lillie lost the boundless energy that she always had, her memory was greatly impacted, and she lost the privilege to drive. As a result of her extreme fatigue, she had to drop out of clubs and volleyball, and she stopped playing her instruments. She no longer volunteered at church, she rarely socialized outside of school, and her test scores plummeted. On top of all that, the medications were not working, but her seizures were intensifying. She began having them every single day, and experienced four different types of seizures. To this day, whenever I see my baby girl convulsing and unconscious, I cry. I don’t imagine I will ever get used to it.
In August of 2019, Lillie had her wisdom teeth pulled. Such a normal procedure that most of us have to endure at some point in our lives. She was cleared by her neurologist to have it done and with her best friend in tow, we arrived at the oral surgeon’s office. Her teeth were pulled without issue, but once they woke her up, the grand mal seizures began, one after another after another. She was transported to the hospital but they could not get the seizures to stop. That is when she developed a new type of seizure, called an absence seizure. She was lying in her bed in the emergency room, and suddenly she went stiff. Her eyes were huge and unfocused, and she was unresponsive. I thought she was dead. I will never forget that feeling in my chest when, for a brief moment, I thought my beautiful girl was gone. My son says he can still hear my screams in his head. Lillie was transported to a different hospital, and went into shock when they moved her. That is the day that she almost died, the day that epilepsy almost claimed such a genuinely good, kind person, and the day that I became determined to find expert care for Lillie. My search led me to Johns Hopkins, world-renowned for epilepsy and neurological care.
Unfortunately, I lost my job for calling in too many times when Lillie needed me. Living in the midwest, the expense of traveling to Johns Hopkins in Baltimore was impossible to afford. My son, Brady, a United States Marine and the best big brother in the world, reached out to Mercy Medical Angels. This wonderful organization made the trip possible, and Lillie was able to be seen at Johns Hopkins. The trip was a success! Though Lillie has to return for inpatient care, the ball is already rolling to change her treatment plan. When we left Baltimore, I saw a spring in my daughter’s step that I haven’t seen in a long time. She had hope again, and thanks to Mercy Medical Angels, Lillie’s giant smile reflected that hope.
From the depths of this mama’s soul, thank you to Mercy Medical Angels and to the donors whose generosity made our life changing trip possible! Though Lillie’s journey with epilepsy continues, we are no longer on a lonely darkened path. Our new path vividly shines with a team of doctors that are just as determined as I am to keep that radiant smile on Lillie’s face.
-Robyn, Lillie’s mother
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