Anthony is currently 9 years old and has battled with epilepsy for the past 5 years. Anthony is not afraid to say he has epilepsy, but his life proves it does not have him! In August of 2014, epilepsy and fear tried to take hold of his life. Epilepsy is tough, but Anthony and his mom, Michele are stronger. Throughout the years, they have become advocates for those battling epilepsy, by creating “Anthony’s Army” -- a team of 100 people walking in “Steps for Seizures” every year at an Epilepsy Research walk by Clayton’s Hope Organization. An organization, that Fearless Movement has had the pleasure of supporting to help further Epilepsy Research. Anthony’s Army shares with the world, they will not resist to fear or epilepsy. They will fight until the battle is won. To be encouraged to live an audacious life regardless of your hardships like Anthony, his mom, Michele and family, read and share their story below! 

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Anthony just turned 4 years old, and was on a family vacation in the Pocono Mountains at Poppy and Mom-Mom’s House. He loved to spend his time with his family, swim and go fishing. One day Anthony and I, (his mommy)  were playing matchbox cars together. I called for Anthony, lying on the floor at eye level with him and I saw his eyes roll behind his head and turn pale white. It was only seconds but felt like forever at the time. When he came more aware, I told him to get the red car and he did. I thought, “Oh he must be tired from swimming all day and playing in the sun.”  We continued to play and then, it happened again and then a few days later, it happened again. I continued to think, he is probably just tired. 

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It continued to happen over and over again and that was when I knew something wasn’t right. I called his pediatrician, shared what has been going on and they wanted to see him right away. We went to the doctors, it happened in the office several times and the doctor saw it as well. That was when the fear began to fill my mind even more as she looked concerned and said, “Anthony is having seizures.” I was lost for words. How can this be? What happened? What do I do next? Why? How come? Where did this all come from? The next steps were to see a Neurologist.

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I called several neurologists and the closest appointment was 6 months out. I was scared, fearful would definitely be the right word because I was lost for words. Thankfully, as soon as I called Anthony’s pediatrician and shared how long we had to wait, she worked her magic and got us an appointment with Neurologist. With Anthony at 4 years old, my family and myself battling the fear of the unknown, we went to the appointment and it was hours long full of a lot of information. As Anthony went to get EEG testing done, he was scared and confused not understanding why all the testing had to be done. We assured him the tests were going to help him and of course, we showed him love and comfort to make him feel safe. He was extremely fearful at first, but in the midst of fear, he showed bravery and since then, is still so brave. 

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Anthony was diagnosed with Complex partial seizures, Child Epilepsy. I had no clue what it was, what was meant for us as a family, didn’t know the next steps, how my child was going to live his life with this. With these fears stirring around in my head, I could not sleep so instead I researched, researched and researched. I had so many questions. I had to teach myself all about epilepsy. That’s when our life with Anthony turned around. Medications, more tests, a lot of doctor visits, tears, and continuous fears, especially of the unknown with many sleepless nights. I needed to know why, how and what can I do for my child?

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I had to put my full trust in God. I was not sleeping because I was watching my son sleep, all night long, making sure he was okay. Throughout it all, Anthony always had a smile on his face. Many more EEGs were performed. Anthony was nervous and fearful but went through all the tests as a champion. Epilepsy was taking over our son to the point where he was having hundreds of seizures a day, having no energy, extremely fatigue, could not play sports at the time and could not retain the information his educators were teaching him at school. He missed a lot of school due to his seizures. We had to fight even harder for him to have somewhat of a normal life. We received an IEP with an aide at school, finally found medications that helped more, and he was able to play basketball! 

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Now Anthony has lived with epilepsy for the past 6 years. He is aware what Epilepsy is and how he is still fighting hard each day to rise above his seizures and fear. He now knows how fear can control him and his life. He knows that praying, fighting hard, and facing your battles head on helps you overcome fear. Most of all, Anthony knows he has family and friends fighting with him and that he is not alone. While he spreads epilepsy awareness and fights back, still he smiles.

 

Fearless Movement has impacted Anthony and my family through their Art Empowerment Program packages. Gifting Anthony, a creative outlet has helped him relax and release the tension and stress seizures can bring. Along with the Art Empowerment Program, the love, support and prayers Ashley (founder of Fearless Movement) has extended through ice-cream dates have helped us push through, become fearless, have faith and stay positive!" 

 

Michele Tartamosa, Fearless Mother of Anthony, Epilepsy Warrior. ​