Stories that speak
Sharing stories that speak of the impact you make when you give to Fearless Movement!
Dane is a local, five-year-old warrior who does not allow epilepsy to define him. Dane and his parents share the challenges and fear they battled during his first seizure and while suffering from uncontrolled seizures.
Dane, Lori, Ashley, and their family inspires our community to rise above fear, persevere, and most importantly... Even though you may have epilepsy or fear, it does not need to have you.
Sydney is a musical theatre advocate,dancer, enjoys time with her family, friends and oh... She has epilepsy.
But it does not have her.
Sydney Spancake is currently 17 years old and has battled with epilepsy for the past 2 years. While Sydney may have epilepsy it certainly does not have her. When living a normal teenage life was always in the picture, epilepsy and fear tried to change that. Sydney and her mother, Stephanie persisted nonetheless. Stephanie and Sydney wanted to share their story of fear, epilepsy and triumph to prove, you are not alone and you too can live a life rising above fear despite your circumstances. To be in unity, empowered and encouraged to take the power back we once gave fear with our community, read and share their story below!
“They say life can change at the drop of a dime. I can honestly say this is the truth. I have witnessed this first hand. Our epilepsy nightmare started on February 15, 2017. This was the day I received a knock on my door at 7:00 am from the mother of one of my daughter's close friends telling me something happened to Sydney on the school bus and I needed to come with her. Imagine, getting a call not knowing what’s going on with your child. The only emotion I could feel was fear. The dime dropped and everything changed.
Sydney had a grand mal seizure on the school bus. How could this be? My perfectly healthy 14-year-old had a seizure? Of course, we tried to think of a million different reasons this could have happened but in the end, the only reason that proved to be true was Sydney having Juvenile Myoclonic Epilepsy. From that moment on, I started to live my life in fear. Fear for the next call saying she had a seizure. Fear of walking in her room to find her not breathing. Fear that we won’t ever be able to find a medication that will stop her seizures.
Fear...it surrounded me. But as I was living in fear, Sydney kept going. Never ever once letting this diagnosis stop her. She got right back on that school bus, went back to dance class after having a seizure there, went back to school after another seizure in front of her classmates, and most of all, got right back up on the stage she loves to perform on. Sydney truly lives by what she told me when this all started, “Mom I can’t live my life in fear”. No matter what her day may hold, she gets out there and tackles it head-on with a smile on her face. Fear doesn’t have Sydney and I have learned through watching her to not let fear have me either.
We have been so lucky to have met Ashley, founder, and CEO of Fearless Movement. She was the first person that Sydney was able to speak with who had the same illness as her. We have loved being able to get involved with this amazing organization at their Epilepsy Awareness Day fundraiser and Strut for Fearless Futures. Spreading the word of not allowing fear to rule our lives all while raising awareness for those battling epilepsy! Fearless Movement has made such a positive impact in our lives."
Stephanie Hasbrouck-Spancake, Fearless Mother of Sydney, Epilepsy Warrior.
Recently, at our Fashion Show, Stephanie Strut for Fearless Futures for Sydney and all of those affected by the fear, epilepsy brings upon their lives!
Stephanie Hasbrouck-Spancake Fearless Mom
Photography by: Suzi Ryan Photography
Stories like Stephanie and Sydney's are why, we hope you would consider getting involved and contributing to combat fear with
Fearless Movement this #GivingTuesday to continue our efforts in serving the fearful and epilepsy communities!
#ContributingToCombatFear #GivingTuesday #StoriesThatSpeak
Anthony loves to fish, play sports, and visit carnivals with his cousins! Oh... and he has epilepsy.
But it does not have him.
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 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!
"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.
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 doctor's, 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.
I called several neurologists and the closest appointment was 6 months out. I was scared, fearful that 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 a 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.
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?
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, extreme 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!
Now Anthony has lived with epilepsy for the past 6 years. He is aware of 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.
Stories like theirs, speak of the impact fear and epilepsy can have on both the individual and their family members' lives.