The inspiration for Friends of Lilly came from a thirteen year old girl, named Lilly, who experiences the hardships that go along with epilepsy. She was diagnosed with epilepsy on December 22, 2003 when she was only three years old and has been struggling with it ever since. Epilepsy is a condition of the nervous system characterized by recurrent seizures occur when powerful, rapid bursts of elect
rical energy interrupt the normal electrical patterns of the brain. Throughout this struggle she has had multiple MRIs (magnetic resonance imaging) that take pictures of her brain using a magnetic field, and countless EEGs (electroencephalogram) that measures the voltage fluctuations in her brain. She recently went through surgery where a cybertronic VNS (vagus nerve stimulator) was implanted into her chest wall to help reduce and hopefully control her seizures.
My name is Courtney Shea and I was introduced to Lilly when her sister, Madi Moore, came to play on our travel softball team, Birmingham Thunderbolts, another 501(c)(3) Non-Profit Foundation. Like us, Lilly enjoys playing softball and we came up with the idea to try to help do something about raising awareness for epilepsy. Through this organization we hope to help prevent and eliminate epilepsy as a health issue for people like Lilly through donations, awareness, and service. All of the money that is raised and donated for this cause will go straight to the foundations supporting research for epilepsy.
Lilly was first diagnosed with Absence Seizures (also known as Petit Mal Seizures) at age 3. She would stare blankly for 10 seconds up to a minute with no response and no eye contact. The seizures were abrupt and sudden and would come in clusters. As soon as she "snapped back" to consciousness another would come and this would last up to 45 minutes. It was as if someone was playing with a light switch to her brain flipping on/off/on/off. The first Neurologist that treated her assured us she would "grow out" of the seizures with medication. When Lilly was 4 years old, she suffered her first Grand Mal Seizure (also known as Tonic-Clonic Seizures). Her body violently convulsed, her eyes rolled around, and her breathing stopped. It was terrifying and she spent the next 5 days in the hospital, the first 24 hours unconscious. This new form of seizure brought new medications. Although she continued to have numerous Petit Mal seizures everyday, we didn't see another Grand Mal seizure for 7 years. On March 6, 2011 the Grand Mals started again. For the rest of that year she would randomly collapse into a Grand Mal just about every other week. Exhausted of all hope and frustrated with her medical treatment, we decided to change Neurologists. In December, 2011, Lilly had her first appointment at Lebonheur Children's Hospital in Memphis, Tennessee. Her new doctor was personable and caring but most importantly, he promised Lilly he would not give up. He did not promise a cure (since there is not a cure for Epilepsy) but sensing a child that had lost hope, he promised a better life. True to the doctors word,her life did indeed get better! Although Lilly now takes 13 pills a day to control her Epilepsy, the number of seizure per day has drastically reduced! On February 8, 2013, Lilly underwent Vagus Nerve Stimulation (VNS)surgery. VNS involves an implantable device that sends electrical impulses into your brain. There's one Vagus nerve on each side of your body. Each nerve runs from your brain stem through your neck and down to your chest and abdomen. With Vagus nerve stimulation, a device called a pulse generator is surgically implanted in your chest. A wire threaded under your skin connects the pulse generator to the left Vagus nerve in your neck. The pulse generator sends out electrical signals along the Vagus nerve to your brain.
