In November of 2007,we heard the words no parent wants to hear. “Your son has a seizure disorder and of all the types to have, this isn’t the one you want.” This started our family’s journey into the world of special needs, developmental delays, Early Intervention and IEPs. Instead of just learning how to be first time parents, we had to figure out how to juggle full-time jobs, doctor’s appointments, therapy sessions and school schedules. Even 4 years later, it remains a challenge.
This year has brought us many new struggles. Even though Max’s seizures are well controlled, his Epilepsy is affecting him every day in other ways. He has constant struggles with his attention and behavior, trying his best to keep his ever-moving body and mind under control. Since Max will turn 5 this summer, we have spent many,many months researching and agonizing over which type of school setting will be right for him and provide him with not only the academic, developmental and social skills he needs to succeed but also allow him to remain a curious, exuberant learner.
Max continues to be a joyful boy. He loves listening to music (among his favorites are Coldplay, the Foo Fighters and Red Hot Chili Peppers). He is obsessed with bridges and loves to look at photos and identify where they are in the world and if they are “walking bridges” or “car bridges”. He can do any puzzle you put in front of him. As I said about him last year, he has perseverance and bravery the likes of which we have never seen. His personality will take him far in life no matter what Epilepsy throws his way.
This year, 200,000 people in the US will be diagnosed with Epilepsy, which is more than will be diagnosed with Breast Cancer and the mortality rate for both is the same. However Epilepsy research will receive 600 million dollars less in funding than Breast Cancer research, and over 300 million dollars less than Alzheimers research. Your support is helping families like ours. The Epilepsy Genome Project, introduced to us this year, is on track to discover the genetic cause of severe childhood forms of Epilepsy, including Infantile Spasms, the original type of seizures Max had. This is a true sign of research dollars at work and may help eliminate another family having to go through what we did, but more importantly may offer a child the chance at a normal, healthy, long life. In addition, the CT Epilepsy Foundation has used donation dollars to develop the nationwide Child Care Education Program that Max’s teachers have benefitted from. They now know what to do in the event a child has a seizure at the center. They know how to administer Max’s medication and what different seizure types look like; which could save his life. This walk is held to raise money for education and support groups, as well as a summer camp for kids and teens living with epilepsy, all the while trying to eliminate or at least help control this unpredictable and life altering disorder.
We appreciate your support and encourage you to donate what you can. Our team name is Max: The Amazing Race and by clicking on the link, all you have to do is enter your name and donation amount. You can also donate to Ian as an individual. Thank you for joining us in this fight.