“The one number that can change your life”
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.
“As parents of a child with a disability, it’s important to be informed and find out what is out there for you,” says Ellen, “which 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).” Epilepsy Alliance of West Central NY is part of Empowering People’s Independence, (EPI).” That call connected the DiStefanos with Mike Radell, EPI’s 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.
“Mike cannot go to camp. He has seizures!” Ellen immediately said.
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.
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’t the only one who looks forward to camp, Joe & Ellen also appreciate the week of respite they receive. “You 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’t 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” Ellen shared.
Ellen found the network group and the connections with other families the most helpful. “Everyone only has partial information and the ability to learn about someone’s else experience is invaluable.” She says, “EPI brings in key speakers, like pharmaceutical reps where families can learn in more depth about a drug and its side effects.” 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’s 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.
It is hard for families to know what resources are out there. “Most of the time you feel you are walking it alone, but you aren’t, you just need to know who to call, having that one number could change your life or the life of your child” Ellen says. “Mike 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’t say enough wonderful things about Mike and what EPI does for all the families they support.”
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