Medications, surgeries, diets, treatments...managing epilepsy is difficult enough. Ending epilepsy? That seems like a daunting task. But we can assure you the more people are part of the movement to speak up, raise funds and advocate, the more successful we will be in getting more specialists to devote their lives to epilepsy care and cure. We are confident that coming together out of isolation and hiding will help break down some of the barriers that make epilepsy an ongoing struggle that it is.
Get a sense of the people in the END EPILEPSY community and what drives their passion, keeping in mind that these inspiring people represent just a small percentage of the thousands battling the burden of seizures. Read on to see what some of our inspiring Team Captains have to say:
"I was diagnosed with Epilepsy at 22. In 1982 I had experienced my 2nd grand mal seizure, but it would take almost 30 years to accept the reality of this diagnosis. Everything changed in June 2012.
While waiting in my Neurologist’s office, an iPad in one hand and a DMV Doctor’s Evaluation in the other – my driving privilege in the balance – I stumbled upon a CNN article titled “Seizures: When Electrical Brainstorm Hits”. That article would mark a turning point in my life.
It was powerful and for the first time, I did not feel marginalized. A week later, I went to the Epilepsy Foundation of Greater Los Angeles office and introduced myself to the team. Later that day, I drafted an email to my friends and family detailing my journey, struggles and pending Department of Motor Vehicles (DMV) review. The support that followed was overwhelming but nothing compared to the burden lifted from my shoulders.
I refuse to let Epilepsy rule my life. I am now cleared to drive by the DMV, continue to work full time, am an expert skier, an avid mountain biker, swim daily and in September, just days before my 50th birthday, took on Mt. Whitney on a 15 hour, single-day hike. I dedicated the hike and my 50th birthday to raising money for this year’s Walk to End Epilepsy and to-date, I am half-way to my $2,500 personal fundraising goal.
I’m one of the lucky ones. Nothing holds me back and I know the money we raise will give others similar opportunities. I’m eternally grateful to my friends at the local Foundation. I look forward to meeting other Team Captains at the Rose Bowl for the Walk to End Epilepsy on October 28thand challenge you help me make this year the best ever! And, “I’m going to be ok.”
- Paul Ramirez, Captain of Team Ramirez
How a Mother Discovered a World of Support through Blogging
"When my seventeen year old daughter Sophie was diagnosed with infantile spasms, a rare and severe form of epilepsy, it was 1995 and she was only three months old. I knew nothing about epilepsy, and the only information I got from the doctor was a caution NOT to read anything about infantile spasms because it was too depressing. The first thing I did was to go to a Barnes and Noble and peruse the medical literature aisle, where I found one book about seizures. I knew of no other families who had children with epilepsy and had no computer to connect with anyone, so any information I got was through dogged word of mouth efforts.
- Elizabeth Aquino, mother and Captain of Team Sophie
"Hello! My name is Breenna Escobedo and I am a twenty year old college student. In September of 2010, I had an extreme reaction to a prescription medication. As a result, I had to have multiple surgeries throughout my stay in the intensive care unit at LAC + USC. Everyone involved in saving my life never gave up and a “Miracle” occurred. The main surgeries were to save my heart and lungs. My heart stopped a few times and as a result of that I sustained brain damage. I was given Pressors to save my heart. Unfortunately, I lost five toes and one finger due to the Pressors side effect, but I’m alive and that’s all that matters!
Almost a year after the incident (in August of 2011,) I had my first seizure. I was terrified and felt extremely helpless as it was occurring. Luckily, my two classmates who sat beside me had family members with Epilepsy, so they knew what to do. I am extremely grateful for them, because I could have been hurt from having a grand mal seizure.
The fact that people were there for me during my seizure, reassures me that some people are aware as to what to do when faced with a seizure. But the general public does not know what to do if they or someone near them seizes. That is partially why I chose to get involved with the Epilepsy Foundation of Greater Los Angeles. Like you, I want to learn more and do something about Epilepsy. No one should have to go through the pain of experiencing or having a loved one experience an Epilepsy related illness
The yearly Walk to End Epilepsy brings a tremendous amount of attention to an illness that is often misconceived or misunderstood. It is one of the times that brings all of us together to discuss, learn from and be inspired by one another’s stories. Last year was my first walk and my team and I had a blast! Simply seeing so many enthusiastic people come together for a cause they feel so strongly about made me feel a part of a community. Now imagine if that community grew. YOU and I both have the power to help make that happen! Educating others about the facts of Epilepsy and how it makes us feel, brings us that much closer to finding a cure.
As for me, Epilepsy is simply a small part of who I am. I have become a more educated and determined person because of it. I am a full-time student, have therapies weekly at the hospital, and am in the process of healing completely. Some things may come easy, others not so much, but I know my determination to overcome my daily obstacles will keep me fighting. Everyone has difficulties in their life; we should all try to eliminate Epilepsy as one. I live my life to the fullest each and every day.
Remember to keep on fighting for strangers, your loved ones and yourself. And like my Mommy always says, 'Smile, you’re alive.'"
- Breenna (Bree) Escobedo, Captain of Team Breezie Bree
"I started to get involved with the Epilepsy Foundation to find support and get help with dealing with acceptance from family and people that don't understand or just don't want to deal with it. When we were young and growing up my brothers and sisters did help me with my transportation and when I had a seizure. I appreciate them for that. However, not until the passing of my father, Alfonso Luis in 2009 did my brothers decide to let me know how they really felt. Because of my seizures growing up, they felt that my parents had to take a lot of their time caring for me.
I have not spoken to my brothers going for over 25 years and have not been invited to family gatherings. They do not know what I go through with epilepsy. They think they do because they have seen me with seizures, but they do not know what it is like to have and to live with it. They do not know what it is to become insecure, to be afraid, get anxious, become withdrawn, not accepted, feel alone, get depressed, have thoughts of death (it is my husband and daughter that keep me going), mood swings, confusions, the side effects of new meds, drowsiness, clumsiness, dealing with headaches, irritation, muscle cramps, panic, jerky movements, difficult speaking, memory loss, loss for words, drawing blank looks from others.
Despite this I still am happy to say that I have been seizure free for 12 years and can drive!
I do have one sister who has had an open communication with me and I do thank her for that. Otherwise, I will turn to my friends that do understand how important it is to me to let me know that I am being thought of. I thank God for the people who understand and accept what it means to have epilepsy.
The main word for me is ACCEPTANCE. I thank the Epilepsy Foundation of Greater Los Angeles for being here now and helping me get through this. I would like to meet and speak to someone who has gone through this kind of experience at the Walk to End Epilepsy at the Rose Bowl on October 28th and I look forward to being around other positive people who know change is possible! Thank you all for taking the time to listen to my story and I would love to hear yours at the Walk."
- Angelica Vallejo, Captain of the Vallejo team
My husband had lost his job about 3 years ago and was out of work for almost 6 months - and believe me we are still feeling the burden of that financial loss. You know the saying that "God only gives you what you can handle." Well, the day my son was born was the same day my husband started his new job, so we thought we were very lucky. Six months later, however, my son Niko had his first seizure. We're still lucky, but the fear that enters into your heart when you are watching your baby go through a tonic-colonic seizure for the first few time is unbelievable and hard.
It took us a year to get his diagnosis of epilepsy. With multiple doctors, ER trips, and so many tears and fears, we wanted to find a way to let our friends and family know about what we were dealing with. For us, the Walk To End Epilepsy was like a coming-out party: Yes...Niko has epilepsy, but no...we are not going to sit back silently.
After the 2011 Walk to End Epilepsy, I wanted to get more involved. While I wish I was wealthy enough to privately fund the research that needs to be done, the truth is that I don’t have millions of dollars. What I do have to offer is a voice. I had started to explore songwriting again and became interested in possibly writing a song for the Foundation.
I am happy to say that with the help of my husband, we started our own music label and released my debut album "Reaching Out" just under two weeks ago. All the proceeds from the title track will benefit fight to end epilepsy, and I will also be singing at the Walk on October 28th. I would love to meet you all and hear your stories.
While I’ve got you reading this letter, I want to encourage all of you to find your own way to help End Epilepsy. Maybe you write, take photos, paint or have some great connections. Whatever it is that you're good at, use it and don’t be afraid to talk about wanting to End Epilepsy. Reach out, connect to others, and we will get the word out to End Epilepsy.
- Stefani Rose, Captain of Team Niko Blue