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What’s your story?
Team Epilepsy Ninjas is the name of our team for Walk to END EPILEPSY – RGV. Our team name stems from my son’s early love of the Teenage Mutant Ninja Turtles and his ability to “ninja kick” his seizures with a positive attitude.
Our Epilepsy Ninja had his first seizure when he was two months old, and our lives turned upside down. We were petrified of the unknown journey ahead of us. After his first EEG, his pediatric neurologist told us of Ethan’s diagnosis of complex partial seizures with a secondary generalization. It was as if he was talking to us in a foreign language. At that moment, our epilepsy journey had officially begun.
We started with genetic testing, MRIs, PET scans, and countless EEGs. He was much braver than we were. Then his seizures were happening multiple times a day where we couldn’t count how many he was having. Then, he was diagnosed with Infantile Spasms. At that moment, we knew we needed a level 4 epilepsy center. We drove six long hours to Texas Children’s Hospital in Houston for more treatment options.
Now, seven years into our journey, Ethan’s diagnosis is cortical dysplasia in his right frontal lobe, which caused his tonic seizures, absence seizures, and subclinical seizures. We have tried and failed eight seizure medications, including Epidiolex (FDA approved cannabis oil).
Our seizure journey took a HUGE leap on March 16th, 2020. Our brave Epilepsy Ninja had a resection of his seizure focus, removing a portion of his right frontal lobe where the cortical dysplasia was. We are praying that by this time next year, we will be celebrating seizure freedom.
How did you hear about the Walk to END EPILEPSY? What made you decide to get involved?
We heard about the Walk to END EPILEPSY through the Epilepsy Foundation Central & South Texas. We knew we wanted to take part in the Walk to raise epilepsy awareness in our community. As a family, we are involved with the Chelsea Hutchison Foundation, based in Colorado. This is a foundation that provides seizure monitoring devices to children to prevent SUDEP.
However, we wanted to raise awareness and make a difference in OUR community, which will directly impact our Ninja. I strongly believe through awareness comes compassion, and in return, you get acceptance. That is what every parent of a child with epilepsy or a disability wants.
Are you involved with the Foundation in any other way?
I participate in the RGV support group, which is a HUGE step for me. I had only shared our story in a raising awareness context. This time, sharing our story was meant to receive support from other mothers who are on the same journey as us.
I was also part of the Walk to END EPILEPSY – RGV committee, helping as much as I could while working full time as an educational diagnostician and through Ethan’s pre-operation appointments in Houston, Texas. I learned so much through that process. Thank you, April Flowers and Mary Saldivar! I had raised awareness through social media platforms, through school districts, and with the city of Edinburg, so being a part of the committee was raising awareness at another level.
How has your participation helped you and your family? What does the Walk mean to you?
Many times through the epilepsy journey, you feel alone. The Walk has helped us have that visual realization that we are not alone; that our family, friends, and community will unite to raise epilepsy awareness. Seeing a crowd of almost 500 people is an actual visual that we are supported.
What is your favorite part of the Walk to END EPILEPSY?
There was a moment when I saw Ethan running past the finish line and look at his medal with pride. I got emotional thinking of everything this brave Ninja has gone through. Behind him was every obstacle he has overcome, and ahead of him is a bright future.
If you could tell someone who is newly diagnosed one thing, what would it be?
Your journey will be unpredictable, and you must take it one day at a time. Find your tribe and keep smiling, knowing that tomorrow will be a better day!
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