Tell us about yourself and the Dravet patient in your life
Santiago Alessandro Anaya is a 3 yr old warrior and he will soon be having a baby brother, Ezequiel. His mommy is Valeria and his daddy is Jose Angel. We live in Del Rio, Tx. Santiago spends a lot of time with his grandparents Aurora and Carlos who also know what to do in case of a seizure and has been with him in every hospitalization. He loves playing drums and many other instruments. He enjoys music and swimming.
When did the patient’s seizures begin?
Santiago was only 2 months old when he had his first seizure on December 15th, 2018 lasting about 45 minutes. At that time we didn’t know he was having a seizure, his legs were twitching and he was too little for us to know that was a seizure. We’ve never experienced a seizure before. We took him to the hospital because we just thought it was so weird for his legs to be twitching for so long but by the time we got to the hospital the twitching had stopped. Turns out it was a seizure. 15 days later he had a second seizure lasting about the same time but doctors kept on saying it was a febrile seizures and he will outgrow them. After that Santiago continued having seizures, we got a neurologist and he started on Keppra. A few days before he turned 4 months he was transferred to San Antonio due to a prolonged seizure. He started a new medication called Trileptal the same day we got released from the hospital we were back in the emergency room with another prolonged seizure. Because the seizures couldn’t stop with the rescue meds he had to get intubated. It was the scariest day of our life! We stopped Trileptal that same day and started on Phenobarbital. He got a Genetic Test done in April we got his diagnostic SCN1A Gene Mutation/ Dravet Syndrome! As the years pass, Santiago has been on many medications, different type of seizures lasting any time from a few seconds to more than 1 hour and 45 minutes, hospitalized many time, intubated many time, and still HOPING FOR A CURE!
What is your hope for the future your loved one? For the Dravet community?
Dravet not only affects our little Warrior but it also affects the whole family and even the community. A lot of people know Santiago and his story. He is know as “Baby Anaya” and every time we are in the hospital due to a seizure or an injury we have a lot of people praying for him. He are hoping for CURE for Dravet Syndrome!!! In the meantime we hope Santiago’s seizure could be control with a medication and the correct dose. I believe in miracles and i wish we could have a miracle and it is to have a cure. I always dream that one day we will wake up and my baby will be seizure free that he will no longer have to take medications and that he will one day go to the doctor and get a genetic test done and we will no longer have that gene! He will one day be a healthy kid! But if thats not possible then a CURE is what all the Dravet Warriors Need and Deserve!
What advice do you have for newly diagnosed Dravet families?
Never give up! There will be hard days but always keep fighting! Ask questions and get to know other Dravet Families to know their experienced and what has helped their Dravet Warriors because there could be something that helped them and it could also help you. Never be afraid of trying things because “what if he or she gets a seizure” because you never know what if he or she will not get a seizure and he or she could be enjoying the activity. And always spread awareness. Make sure people know what Dravet Syndrome is to help find a cure!