The moment you first meet Tracy Estrada-Hiett, you feel as if there is a story. And there is. But in the next moment, you feel as though you could tell her your story, as though you know she’s heard them all and now she’s ready to hear yours. And she will.
It’s almost impossible to imagine what it’s like to lose your child. It seems beyond impossible – to first lose a child to epilepsy, and then make that cause personal so that another parent doesn’t lose their child. Yet, here we are in the bedroom of Tracy’s daughter, Gen (short for Genevieve), who died just over a year ago during a seizure, and her mother, Tracy, is defying and redefining “impossible.”
“The first thing people say when they find out (about Gen) or when they meet me is, ‘I’m so sorry’ or ‘I don’t know what to say,’” says Tracy, who pauses and adds, “No one knows what to say, until they start talking.”
While others might not know what to say, Tracy is certainly willing to share her story, which is also Gen’s story.
Since the death of her daughter, Tracy has been tireless in her efforts to raise awareness and funds for epilepsy, primarily through her team for the Walk to End Epilepsy — The Gen Dare to Dream team. At the 2014 Walk to End Epilepsy, her team was the largest in attendance with close to 200 members. That would be an impressive feat all on its own, but considering the timeline of events, its almost unbelievable.
“Every time someone would hear her story they would want to know, ‘What can I do?’ ‘How can I help?’," Tracy adds. "And every time I would tell them to join the team and they did.”
And it is Gen’s story that makes this story about Tracy so difficult.
Gen was diagnosed with epilepsy at the age of 17 and the next four years of her life would be filled with the struggles that so many in the epilepsy community are familiar with: the unpredictability of seizures, the countless doctors appointments and trips to neurologists, and the overwhelming feeling of isolation.
“Gen felt so isolated and like she was the only one… she, like so many people with epilepsy, felt alone and felt as if no one knew what she was going through,” Tracy explains. “What’s frustrating to know now is that [epilepsy is] not rare and for most people, they probably know someone who has it. You just might not know that they have it.”
Despite the struggles with her disease, Gen was always chasing her dreams and trying to live the life of any teenage girl. There was school. There were jobs. There were family and friends, and there was music. Gen loved music. She loved to sing and to produce and was creating her own album.
Tracy was there every step of the way, encouraging her daughter to live for the good days.
“She was thankful every day for everything she could do and everything that felt normal," Tracy shares. "And I would always tell her, ‘Don’t give [epilepsy] more than it already has. If you want to go to school, you will. If you want to work, you should.’ And it wasn’t easy but between our family and the community around her, Gen had the support of many people so she could pursue her dreams.”
But then that morning in May, there would be no dreams, only every parent’s worse nightmare. Gen didn’t wake up.
She died in her sleep from SUDEP (sudden unexpected death in epilepsy).
It was a tragic experience only made worse because Tracy didn’t know it was possible.
“Nobody warned me or told me about SUDEP. Gen fit every category for it. And I can’t go forward without making sure every parent knows that this could happen because it did happen. It does happen,” she exclaims.
It has become a major part of Tracy’s mission to inform the general public about the seriousness and the severity of epilepsy. She has told her story to just about anyone who will listen and recently shared it with the Chino Hills Champion.
“People need to know how serious this is and they need to know how common it is and more than anything," she explains. "I want people to not be afraid to tell their story.”
And that is why we are here, inside Gen’s room, surrounded by pictures of her and her friends, artwork she created, and old lyrics scribbled on pieces of paper, still saved on her dresser. As much as no one wants it to be, including Tracy, this now must be Tracy’s story. And it is.
Along with her 2015 walk team, The Gen Dare to Dream Team 2, Tracy is also spearheading an effort with End Epilepsy to host a Studio E: Art Therapy program in San Bernardino County, and she and her son Timmy have become fixtures at End Epilepsy events.
“I’m excited to get started with the Art Therapy program and we recently just hosted a dinner to fundraise for the Walk,” she says. “Our goal for our Walk team this year is to double the size of the team, and with programs like art therapy or a support group, the goal is to provide a place for everyone who is dealing with epilepsy to meet in this area.”
When asked for advice she has for families or others who are also in the fight to End Epilepsy, Tracy pauses and says candidly, “As a family member, it’s okay to feel all the things you don’t think you should feel. You can feel tired. You can feel angry. You can feel sad. And you need to know it’s okay to ask for help. Gen had so much support and after she passed I needed support and its important that everyone get the support they need. This doesn’t just affect the person with epilepsy, it affects everyone.”
As the conversation is coming to a close, there is a moment of reflection and then the most difficult question that can be asked — is asked — because it must be:
What do you think your daughter would think of you and the work you’re doing? Do you think she’d be proud?
Tracy smiles, the same smile that Gen has in all of the photos around the house, and says,
"She was my best friend. We fought; we cried; we laughed, and we loved," Tracy remembers. "She sacrificed herself because she knew it would help people. She knew she could do more, and this could be a thing that helps people and that’s what she loved to do.”
And in that way, the story about Tracy and the work she’s doing, is about her. As it should be.
And Gen’s story, will be told about her. As it must be.
*Editors Note: As mentioned in the Chino Hills Champion story, a few months ago Tracy began treatment for ovarian cancer. End Epilepsy asked her for an update on how she is feeling and how her treatment is going.
“I’m up. I’m okay. I’m working. They tell me I’m doing well and I’ll be fine so I believe them. I’m going to fight this and do what I set out to do,” Tracy said.
We have no doubt.
Story and pictures courtesy of the Epilepsy Foundation of Greater Los Angeles