Tracy Dixon-Salazar

@tracy216355 | contributor
Dr. Dixon-Salazar* is a neuroscientist, geneticist, and, patient advocate. Her desire to get her Ph.D. was inspired by her daughter who developed Lennox-Gastaut Syndrome (LGS) at the age of 2. She did her Ph.D. and post-doctoral work at UC, San Diego where she studied the mechanisms of brain development and synaptic plasticity, identified genetic causes of rare disorders in children, and researched precision therapeutics in stem cell and animal models of pediatric disease. During her research tenure, and after 16 years of watching daily, unrelenting seizures in her child, she uncovered the driver of her daughter’s illness and identified a novel precision therapy that improved her child’s life. Dr. Dixon-Salazar is an accomplished scientist, proven thought leader, highly sought-after speaker, and staunch advocate for genomic medicine, patient-driven research, and patient empowerment. *Dr. Dixon-Salazar did not receive any compensation for writing this story and the content is her own work.
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Why It's OK to 'Drop My Sword' and Cry as a Parent

My daughter has been living with Lennox-Gastaut syndrome (LGS) for exactly 23 years. She’s 25 now. Daily, relentless seizures took over her life and set us down a road none of us even knew existed, let alone thought we’d find ourselves on. 23 years is also the exact amount of time I’ve had to be my daughter’s fiercest warrior. Seizures robbed her of so many things. And it’s robbed her of her voice, so I advocate for her as much as possible. I once started compiling a list of all the roles I’ve taken on over the years to try to help her. All the battles I’ve had to fight. Roles I was never trained to take on, but were thrust in my lap nonetheless. Here are just a few, in no particular order: Emergency medical technician (seizures don’t always end) Ambulance driver (Did you know 911 can actually put you on hold? We’d drive ourselves.) CPR administrator Doctor Nurse Physical therapist Dietician Medical detective Safety patrol officer (I should record “wear your seizure helmet” and just hit play.) Lawyer and estate planner End-of-life planner Advocate Oh yeah, and Mom. Which of these hats I wore in a day depended on whichever way the “seizure winds” blew us. Seizures struck every day, but some days it was only five to 10. Other days, she had hundreds, too many to count. On those days, we were lucky if we managed to eat, get dressed and make it out the door. Eternally vigilant out of necessity, I’d pick up my sword each day and fight our way to the best possible treatments, therapies, and life for my little girl. Most of the time, it wasn’t actually people I was fighting against. Rather, it was unwitting agents in a broken medical system. It’s a system that is definitely not working for patients and their loved ones. It’s failed us many times. Health care providers don’t think it’s working. Payors aren’t happy. The government debates it daily. I keep wondering who the system is working for. I’m hopeful things are changing for the better. It’s slow. Over the last 23 years, I’m happy to report I’ve also become what I hope some would say is a good advocate, not just for my child, but for those that will come after her. Because of my child, I pursued a PhD in neuroscience and helped advance the field of genomic medicine (including helping my daughter). I’ve worked tirelessly to bring the patient voice to all aspects of research, therapy development, health care, and policy. And I’ve met some of the most incredible, inspirational people that give me true, unfettered hope for the future. For the record though, I admit that I do cry. Some days, I just need to drop my sword and cry for just a while. I allow it. I need it. During this time, I send myself to my room (for everyone’s protection) where I am allowed to say anything, be anything, and think anything. I can cry and rage and beat my pillow with that blue baseball bat I keep in the closet nearby. I can kick and scream and yell and bite (just not to any living things). I can cuss like a sailor, get bent out of shape, add insult to injury, bark up the wrong tree, compare apples to oranges, and have my cake and eat it too. I can even say that I hate LGS. I can do all of these things. But my one rule (apart from not harming the living) is I can’t stay there. After my tantrum is over, I must move onward and upward — somehow. I used to feel horribly guilty about these moments, which happen a few times a year now, more often in the early days of her illness. But oftentimes, after these dark moments that I’m not proud of, I emerge with a new realization, a new understanding, and sometimes a new acceptance of this road we have been set on. It’s like I shed an old skin, making way for a new one. A tougher one. It’s purifying. Then, I remember why I fight. I fight for my daughter. I fight out of love for her, as she lives and loves despite her so many challenges. Her bruises, her bravery, her tenacity inspire me. And when the outburst is over, and I’ve remembered my “why,” I can now wipe away my tears, pick up my sword, and get back in the fight. We have a future to change. Keep fighting my fellow warriors.

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Why It's OK to 'Drop My Sword' and Cry as a Parent

My daughter has been living with Lennox-Gastaut syndrome (LGS) for exactly 23 years. She’s 25 now. Daily, relentless seizures took over her life and set us down a road none of us even knew existed, let alone thought we’d find ourselves on. 23 years is also the exact amount of time I’ve had to be my daughter’s fiercest warrior. Seizures robbed her of so many things. And it’s robbed her of her voice, so I advocate for her as much as possible. I once started compiling a list of all the roles I’ve taken on over the years to try to help her. All the battles I’ve had to fight. Roles I was never trained to take on, but were thrust in my lap nonetheless. Here are just a few, in no particular order: Emergency medical technician (seizures don’t always end) Ambulance driver (Did you know 911 can actually put you on hold? We’d drive ourselves.) CPR administrator Doctor Nurse Physical therapist Dietician Medical detective Safety patrol officer (I should record “wear your seizure helmet” and just hit play.) Lawyer and estate planner End-of-life planner Advocate Oh yeah, and Mom. Which of these hats I wore in a day depended on whichever way the “seizure winds” blew us. Seizures struck every day, but some days it was only five to 10. Other days, she had hundreds, too many to count. On those days, we were lucky if we managed to eat, get dressed and make it out the door. Eternally vigilant out of necessity, I’d pick up my sword each day and fight our way to the best possible treatments, therapies, and life for my little girl. Most of the time, it wasn’t actually people I was fighting against. Rather, it was unwitting agents in a broken medical system. It’s a system that is definitely not working for patients and their loved ones. It’s failed us many times. Health care providers don’t think it’s working. Payors aren’t happy. The government debates it daily. I keep wondering who the system is working for. I’m hopeful things are changing for the better. It’s slow. Over the last 23 years, I’m happy to report I’ve also become what I hope some would say is a good advocate, not just for my child, but for those that will come after her. Because of my child, I pursued a PhD in neuroscience and helped advance the field of genomic medicine (including helping my daughter). I’ve worked tirelessly to bring the patient voice to all aspects of research, therapy development, health care, and policy. And I’ve met some of the most incredible, inspirational people that give me true, unfettered hope for the future. For the record though, I admit that I do cry. Some days, I just need to drop my sword and cry for just a while. I allow it. I need it. During this time, I send myself to my room (for everyone’s protection) where I am allowed to say anything, be anything, and think anything. I can cry and rage and beat my pillow with that blue baseball bat I keep in the closet nearby. I can kick and scream and yell and bite (just not to any living things). I can cuss like a sailor, get bent out of shape, add insult to injury, bark up the wrong tree, compare apples to oranges, and have my cake and eat it too. I can even say that I hate LGS. I can do all of these things. But my one rule (apart from not harming the living) is I can’t stay there. After my tantrum is over, I must move onward and upward — somehow. I used to feel horribly guilty about these moments, which happen a few times a year now, more often in the early days of her illness. But oftentimes, after these dark moments that I’m not proud of, I emerge with a new realization, a new understanding, and sometimes a new acceptance of this road we have been set on. It’s like I shed an old skin, making way for a new one. A tougher one. It’s purifying. Then, I remember why I fight. I fight for my daughter. I fight out of love for her, as she lives and loves despite her so many challenges. Her bruises, her bravery, her tenacity inspire me. And when the outburst is over, and I’ve remembered my “why,” I can now wipe away my tears, pick up my sword, and get back in the fight. We have a future to change. Keep fighting my fellow warriors.

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Why It's OK to 'Drop My Sword' and Cry as a Parent

My daughter has been living with Lennox-Gastaut syndrome (LGS) for exactly 23 years. She’s 25 now. Daily, relentless seizures took over her life and set us down a road none of us even knew existed, let alone thought we’d find ourselves on. 23 years is also the exact amount of time I’ve had to be my daughter’s fiercest warrior. Seizures robbed her of so many things. And it’s robbed her of her voice, so I advocate for her as much as possible. I once started compiling a list of all the roles I’ve taken on over the years to try to help her. All the battles I’ve had to fight. Roles I was never trained to take on, but were thrust in my lap nonetheless. Here are just a few, in no particular order: Emergency medical technician (seizures don’t always end) Ambulance driver (Did you know 911 can actually put you on hold? We’d drive ourselves.) CPR administrator Doctor Nurse Physical therapist Dietician Medical detective Safety patrol officer (I should record “wear your seizure helmet” and just hit play.) Lawyer and estate planner End-of-life planner Advocate Oh yeah, and Mom. Which of these hats I wore in a day depended on whichever way the “seizure winds” blew us. Seizures struck every day, but some days it was only five to 10. Other days, she had hundreds, too many to count. On those days, we were lucky if we managed to eat, get dressed and make it out the door. Eternally vigilant out of necessity, I’d pick up my sword each day and fight our way to the best possible treatments, therapies, and life for my little girl. Most of the time, it wasn’t actually people I was fighting against. Rather, it was unwitting agents in a broken medical system. It’s a system that is definitely not working for patients and their loved ones. It’s failed us many times. Health care providers don’t think it’s working. Payors aren’t happy. The government debates it daily. I keep wondering who the system is working for. I’m hopeful things are changing for the better. It’s slow. Over the last 23 years, I’m happy to report I’ve also become what I hope some would say is a good advocate, not just for my child, but for those that will come after her. Because of my child, I pursued a PhD in neuroscience and helped advance the field of genomic medicine (including helping my daughter). I’ve worked tirelessly to bring the patient voice to all aspects of research, therapy development, health care, and policy. And I’ve met some of the most incredible, inspirational people that give me true, unfettered hope for the future. For the record though, I admit that I do cry. Some days, I just need to drop my sword and cry for just a while. I allow it. I need it. During this time, I send myself to my room (for everyone’s protection) where I am allowed to say anything, be anything, and think anything. I can cry and rage and beat my pillow with that blue baseball bat I keep in the closet nearby. I can kick and scream and yell and bite (just not to any living things). I can cuss like a sailor, get bent out of shape, add insult to injury, bark up the wrong tree, compare apples to oranges, and have my cake and eat it too. I can even say that I hate LGS. I can do all of these things. But my one rule (apart from not harming the living) is I can’t stay there. After my tantrum is over, I must move onward and upward — somehow. I used to feel horribly guilty about these moments, which happen a few times a year now, more often in the early days of her illness. But oftentimes, after these dark moments that I’m not proud of, I emerge with a new realization, a new understanding, and sometimes a new acceptance of this road we have been set on. It’s like I shed an old skin, making way for a new one. A tougher one. It’s purifying. Then, I remember why I fight. I fight for my daughter. I fight out of love for her, as she lives and loves despite her so many challenges. Her bruises, her bravery, her tenacity inspire me. And when the outburst is over, and I’ve remembered my “why,” I can now wipe away my tears, pick up my sword, and get back in the fight. We have a future to change. Keep fighting my fellow warriors.

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Why It's OK to 'Drop My Sword' and Cry as a Parent

My daughter has been living with Lennox-Gastaut syndrome (LGS) for exactly 23 years. She’s 25 now. Daily, relentless seizures took over her life and set us down a road none of us even knew existed, let alone thought we’d find ourselves on. 23 years is also the exact amount of time I’ve had to be my daughter’s fiercest warrior. Seizures robbed her of so many things. And it’s robbed her of her voice, so I advocate for her as much as possible. I once started compiling a list of all the roles I’ve taken on over the years to try to help her. All the battles I’ve had to fight. Roles I was never trained to take on, but were thrust in my lap nonetheless. Here are just a few, in no particular order: Emergency medical technician (seizures don’t always end) Ambulance driver (Did you know 911 can actually put you on hold? We’d drive ourselves.) CPR administrator Doctor Nurse Physical therapist Dietician Medical detective Safety patrol officer (I should record “wear your seizure helmet” and just hit play.) Lawyer and estate planner End-of-life planner Advocate Oh yeah, and Mom. Which of these hats I wore in a day depended on whichever way the “seizure winds” blew us. Seizures struck every day, but some days it was only five to 10. Other days, she had hundreds, too many to count. On those days, we were lucky if we managed to eat, get dressed and make it out the door. Eternally vigilant out of necessity, I’d pick up my sword each day and fight our way to the best possible treatments, therapies, and life for my little girl. Most of the time, it wasn’t actually people I was fighting against. Rather, it was unwitting agents in a broken medical system. It’s a system that is definitely not working for patients and their loved ones. It’s failed us many times. Health care providers don’t think it’s working. Payors aren’t happy. The government debates it daily. I keep wondering who the system is working for. I’m hopeful things are changing for the better. It’s slow. Over the last 23 years, I’m happy to report I’ve also become what I hope some would say is a good advocate, not just for my child, but for those that will come after her. Because of my child, I pursued a PhD in neuroscience and helped advance the field of genomic medicine (including helping my daughter). I’ve worked tirelessly to bring the patient voice to all aspects of research, therapy development, health care, and policy. And I’ve met some of the most incredible, inspirational people that give me true, unfettered hope for the future. For the record though, I admit that I do cry. Some days, I just need to drop my sword and cry for just a while. I allow it. I need it. During this time, I send myself to my room (for everyone’s protection) where I am allowed to say anything, be anything, and think anything. I can cry and rage and beat my pillow with that blue baseball bat I keep in the closet nearby. I can kick and scream and yell and bite (just not to any living things). I can cuss like a sailor, get bent out of shape, add insult to injury, bark up the wrong tree, compare apples to oranges, and have my cake and eat it too. I can even say that I hate LGS. I can do all of these things. But my one rule (apart from not harming the living) is I can’t stay there. After my tantrum is over, I must move onward and upward — somehow. I used to feel horribly guilty about these moments, which happen a few times a year now, more often in the early days of her illness. But oftentimes, after these dark moments that I’m not proud of, I emerge with a new realization, a new understanding, and sometimes a new acceptance of this road we have been set on. It’s like I shed an old skin, making way for a new one. A tougher one. It’s purifying. Then, I remember why I fight. I fight for my daughter. I fight out of love for her, as she lives and loves despite her so many challenges. Her bruises, her bravery, her tenacity inspire me. And when the outburst is over, and I’ve remembered my “why,” I can now wipe away my tears, pick up my sword, and get back in the fight. We have a future to change. Keep fighting my fellow warriors.

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Fighting for a Cure for Lennox-Gastaut Syndrome

According to my records, I’ve witnessed more than 40,000 seizures—a remarkable number, even for a medical professional. Still, I’m not a medical doctor. I’m a mom. I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my 2-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “Her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh. Savannah’s seizures worsened despite treatment. By age 3, she was having multiple types of seizures and had to wear a helmet. By age 4, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age 5, she was seizing dozens of times a day, and delays in her development were becoming apparent. At age 5, Savannah was diagnosed with Lennox-Gastaut syndrome (LGS), a severe epilepsy syndrome with a horrific prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was found, and with no family history or precipitating event, we were mystified. It has been devastating to watch what LGS has done to my child. With over 40,000 seizures in 20 years, it has definitely left its mark. At 23, Savannah is the developmental age of a 5-year-old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the many medications and the many seizures. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear SUDEP, Sudden Unexpected Death in Epilepsy – will one day take her life. Because of her developmental delays, Savannah might not fully realize how her life is different because of LGS. She has a childlike happiness, an infectious giggle, and is the most loving soul I’ve ever met. But I realize how different life is for her. Most likely, she will have to be dependent on others for her well-being, meaning she is at risk for being taken advantage of by those who are dishonest. She must continue to take medications despite side effects, because the alternative is much worse. Her unrelenting seizures will make it difficult to participate in activities. And I will continue to live in fear of her death. What I wouldn’t give to cure LGS. During those early years of seizures and utter confusion, I began to read all I could about epilepsy. I enrolled in college in an effort to understand the many research papers I was reading, which were too advanced for my comprehension. Ironically, I thought I needed to go to college to take English classes to understand these papers, but soon learned it wasn’t English I needed, rather, it was science. I took my first science course and fell in love with the subject. I attended classes while my children were at school, and stayed up late to study. Somehow, 12 years later, and after many grueling years, I graduated with my PhD in neurobiology. It was my deepest desire to help the next generation of Savannah’s to live a better life. When Savannah turned 18, things changed. My own research as a genomic scientist revealed that Savannah had genetic mutations in numerous calcium channel genes. I predicted this could be the driver of her epilepsy. After painstaking risk/benefit analysis of the data, we began treating her with a calcium-blocking drug to try to stop her daily seizures and status epilepticus. Much to everyone’s surprise, it worked! Within two weeks, Savannah’s seizure numbers dropped by 95% and her episodes of non-stop seizures stopped completely. That was six years ago, and she continues maintain these numbers. Once on a seven-drug regimen, Savannah has been weaned down to four. Soon it will be three. She is growing and developing again in ways we never thought possible, and while she will most likely be unable to live independently, she is thriving! I often think that she is one of the “lucky” ones. As both a mom and a scientist, I understand, in a profound way, that we must never give up the fight to stop seizures – and we never will. The real war on LGS is being waged at home, in the trenches as I call it, by each family. We must help them. It is also being waged in the lab where new research is critical to the improvement of our understanding of LGS, and in the clinic, where each doctor must understand the latest advances to best help patients. One day, you, me, and everyone in our global LGS family, will conquer this disorder, and seizures will be less likely to determine our children’s future. I’m looking forward to that day. Let’s keep fighting! We want to hear your story. Become a Mighty contributor here .