\u201cThe one number that can change your life\u201d<\/p>\n\n\n\n
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Imagine moving to a new city, with a child who has a disability and not knowing where to turn for help. That is the reality that Joe and Ellen DiStefano faced when they moved their family from New Jersey to Rochester in 2007. Their son Mike had his first seizure at five months old and was later diagnosed with autism.<\/p>\n\n\n\n
\u201cAs parents of a child with a disability, it\u2019s important to be informed and find out what is out there for you,\u201d says Ellen, \u201cwhich is why shortly after our move, Joe found and called the Epilepsy Association of Greater Rochester, (now known as the Epilepsy Alliance of West Central NY).\u201d Epilepsy Alliance of West Central NY is part of Empowering People\u2019s Independence, (EPI).\u201d That call connected the DiStefanos with Mike Radell, EPI\u2019s Education Coordinator and Camp Director, who invited them to their first support group meeting. At that first meeting the DiStefanos learned about all the epilepsy services that were available to them, including Camp EAGR.<\/p>\n\n\n\n
\u201cMike cannot go to camp. He has seizures!\u201d Ellen immediately said.<\/p>\n\n\n\n
Camp EAGR, is the only week-long camp for children and young adults with epilepsy and seizure disorders in New York. Joe and Ellen were so nervous that they waited until 2011 to send Mike to camp. A decision that they now wish they had made sooner. Mike has been going every year since, and loves everything about camp, but especially being around other kids with epilepsy.<\/p>\n\n\n\n
Mike has established lifelong friends through Camp EAGR. He really loves spending time with his friend Daniel who he met and roomed with ever since his first year at camp. Mike isn\u2019t the only one who looks forward to camp, Joe & Ellen also appreciate the week of respite they receive. \u201cYou need to be vigilant all the time when you are a parent of a child with disability, but that week of camp is a vacation for us. We don\u2019t worry about Mike with the around the clock care provided by camp counselors and by the UR Medicine Child Neurology staff that volunteer. We get to recharge, and it is such a gift\u201d Ellen shared.<\/p>\n\n\n\n
Ellen found the network group and the connections with other families the most helpful. \u201cEveryone only has partial information and the ability to learn about someone\u2019s else experience is invaluable.\u201d She says, \u201cEPI brings in key speakers, like pharmaceutical reps where families can learn in more depth about a drug and its side effects.\u201d Ellen also found the annual Dinner with the Doctors very useful. It is an opportunity to make connections, learn of new therapies, resources, and ask questions. Families who attend EPI\u2019s Dinner with the Doctors are able to learn about epilepsy in more broad terms and get information that is not possible to receive in the limited 15 minutes visit with their own neurologist.<\/p>\n\n\n\n
It is hard for families to know what resources are out there. \u201cMost of the time you feel you are walking it alone, but you aren\u2019t, you just need to know who to call, having that one number could change your life or the life of your child\u201d Ellen says. \u201cMike is that number for me and I now have become an advocate for EPI because I know what an amazing resource they are. I recently reached out to Mike Radell about enrolling Mike in Self-Direction and he connected me to the right person to make that happen. Mike will now be receiving both epilepsy and Self-Direction services from EPI. I can\u2019t say enough wonderful things about Mike and what EPI does for all the families they support.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
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