Epilepsy affects an estimated 1.2% of people in the United States, according to the Centers for Disease Control and Prevention. And yet, despite how common it is, the origin is often shrouded in mystery.
In fact, in about half of the people with epilepsy, the condition has no identifiable cause, including for Savannah Salazar.
That is until her mother refused to give up and finally found the answers the doctors couldn’t.
A Grim Diagnosis
Savannah Salazar before suffering 40K+ epileptic seizures
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Savannah was two years old when she woke up her parents choking. It was the first of more than 40,000 seizures that she would experience over the next sixteen years. Doctors diagnosed her with epilepsy. Yet, despite treatment, her condition worsened.
By the time she was three, she was having multiple types of seizures and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless emergency rescue medications were used. By five, she was seizing dozens of times a day and was also diagnosed with Lennox-Gastaut syndrome (LGS), “a severe epilepsy syndrome with a horrific prognosis.”
All of the seizures came with a devastating cost.
She stopped developing mentally, trapped in the brain of a toddler. She couldn’t read or write or use the bathroom. Every night her mom checked on her to make sure she was still breathing, terrified that SUDEP, (Sudden Unexpected Death in Epilepsy) – would one day take her life.
A Mother’s Quest For Answers
For years, Tracy Dixon-Salazar and her husband questioned why this was happening to their daughter. How could she go from a healthy, happy two-year-old to having 300 intense seizures a month? Frustratingly, her doctors didn’t have any answers.
So, Tracy took matters into her own hands.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” she shared with Today.
“And who is more motivated to understand it than the people who are directly impacted? And plus it’s attacking the thing that is most precious to you — it’s your kid.”
She started reading everything she could get her hands on about epilepsy. However, the research papers were difficult to understand, often far beyond a layman’s comprehension. So, she enrolled in college. She took English classes hoping to help her better understand the scientific literature she was reading.
It didn’t. She turned to sciences.
“I just wanted to understand what was going on with my child. I didn’t go into this thinking I was ever going to help her.”
Tracy attended classes while her children were at school and stayed up late to study — for 12 years.
“Somehow, 12 years later, and after many grueling years, I graduated with my PhD in Neurobiology.”
The True Power of a Mother’s Love
Young girl with her parents.
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Today, Dr. Tracy Dixon-Salazar is a neuroscientist, geneticist, and patient advocate. She also single-handedly changed her daughter’s life.
After years of rigorous study and research into the genetics of epilepsy, Tracy made a groundbreaking discovery.
“Savannah didn’t have an inherited epilepsy,” Tracy explained. “I sequenced her. I did all this analysis, and I was able to show she’s got calcium channel mutations.”
By studying Savannah’s genome, Tracy discovered that she had certain genetic mutations in numerous calcium channel genes. Believing this could be the driver of her daughter’s epilepsy, she decided to start treating the now 18-year-old with calcium blockers.
Miraculously it worked! Within two weeks, Savannah’s seizures dropped by 95% and her episodes of non-stop seizures stopped completely.
Eleven years later, she’s living a completely different life and thriving.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy.”
She’s “obsessed with boys” and listens to singer-songwriters on social media. And while the brain damage was too severe to be completely reversed and she will likely never live independently, she’s reaching milestones her parents — and doctors — never dreamed possible.
As for Tracy, she’s dedicated her career to helping other families dealing with epilepsy, currently serving as the executive director of the LGS Foundation. Her dream is to eventually find a cure.
There’s a lot to be said about the power of a mother’s love. It is a FORCE that defies logic and reason. And despite the odds stacked against it, somehow it has the power to achieve the impossible.
It’s thanks to her mother’s love that Savannah’s life has been transformed. But not just her life, the lives of countless others as well.
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