The boy in the picture is my son Nicholas. He is 8 years old and was diagnosed with infantile spasms (rare seizure) around 6 months of age. He had 50-60+ seizures a day for about 2 1/2 straight years. The doctors tried every possible medication available at the time to control them with no luck. Finally after a tough 3 years and the right combination of medication he was finally seizure free in 2014.
Unfortunately in 2016 his seizures returned and left Nick again battling epilepsy. His seizures have now developed into focal seizures. He is developmentally delayed.
He doesn't eat solid foods and his main source of nutrition is Pediasure. He lost the ability to eat solid foods when he was put on the ketogentic diet early in his diagnosis to stop the seizures. Since then he will not touch food. Communication is also a problem. He is about one years old developmentally. He's non verbal but throughout school, occupational and physical therapy he is learning, but he has a long and challenging road ahead.
Throughout it all he smiles everyday, loves music, Nascar (Joey Logano), WWE, monster trucks and watching his brother play hockey. We have learned a lot as a family and in dealing with this disease. It's not easy but if Nicholas can smile throughout all that he has been through so can we. He is the absolute definition of the word "Warrior" and is a motivator and inspiration to everyone is meets and knows.
We never know what tomorrow brings and making plans is hard to do. But our intention is to raise as much awareness as humanly possible and let others know that although they feel alone, their not. We been there and are still there battling everyday.
We look forward seeing you all in our 2nd year of the Sharon's Ride.Run.Walk and raising awareness as we sharing Nick's story and hear many others who battle this same disease. We will not give up!