Hi, and thanks for taking a minute to learn about our epilepsy story! Lily was diagnosed with epilepsy 9 years ago after she had her first seizure on the way to school. We were blind-sided by this development in her health. Up to that point, she had been an incredibly healthy child, but our lives completely changed that day.
Over the next 5 years, we would take an extraordinary journey through the healthcare system. We would run on the horizon of science until we had explored every single option available to her. She would set a hospital record for the most leads inserted into one hemisphere of her brain during her first brain surgery, and then she would continue on to have 8 more brain surgeries and a 10th neurosurgery over the next few years.
We have learned so much more than we ever hoped to know about neurology, and if not for the Epilepsy Foundation, we could not have properly advocated on her behalf. Thanks to the EFCST, advances in medicine, and a progressive team of doctors, Lily's health has improved significantly, but she still has about 30 seizures a month.
The hard truth is that we may never have a cure for her, but a greater truth is that we will never give up on the possibility of one. Along with the Epilepsy Foundation, we will continue to #AimForZero.
The support the Foundation has given us over the last 9 years has been immeasurable, and we are doing all we can to pay it forward. That way, when families receive their diagnosis in the future, they won't be blindsided like we were.
In an effort to raise awareness, we have been very busy at both the national and local levels. Through EFCST, Lily participated in Epilepsy Foundation of America's teen advocacy program, Teens Speak Up. We have traveled to Washington D.C. twice in order to receive advocacy training and to meet with our legislators as we advocated for legislation that is of benefit to the epilepsy community. Locally, we have worked to bring this walk to life, started a support group, and obtained proclamations of epilepsy awareness month from the City of McAllen and Hidalgo County. Our proudest achievement has been providing emergency seizure response training to over 40 first responders and all officers in the McAllen ISD PD.
So why is our goal $2,000? Because one of the most important services that EFCST offers is Camp Brainstorm, a camp for children with epilepsy. At this camp, every child is able to participate in every activity because every activity is tailored to their needs. For a kid who lives in a world of "no" (No, you can't climb that tree; no, it's too dangerous to play on the monkey bars; no, you can't take a bath- you have to take a shower; no, no, no...), Camp Brainstorm provides a world of "yes." Camp Brainstorm has taught our kid a world of independence that is difficult for us to otherwise simulate.
For every camper that attends Camp Brainstorm, the cost is about $1,000, but EFCST covers that cost so that our kids can experience this at no cost to the family. We've set the goal at $2,000 because that would cover the cost of Lily's camp plus one other child.
We hope you'll consider making a donation. Every dollar will help us reach our goal, and any amount you can contribute is deeply appreciated. Thank you for reading our story; we hope you will join us on Nov. 16th at the Edinburg Municipal park as we join together to Walk to End Epilepsy.
