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A Constant in an Uncertain World

Dylan Zuege was only three years old when his seizures started. His parents, Karen and Jeff, were shocked by the severity of their son’s epilepsy. “He was having hundreds of seizures a day. At one point he was on four different medications but still having daily episodes,” says Karen. Dylan was quickly diagnosed with severe Doose syndrome, which is a more uncommon form of epilepsy. Karen says, “it was so hard, we had a small baby at home and epilepsy is so unpredictable. Life has been stressful.”

The Zeuge family has to travel to UNC from Wilmington frequently for tests, procedures and appointments. “We were referred to the Ronald McDonald House of Chapel Hill by the UNC Neurology department, and it has been such a blessing. It makes our trips here so much easier and less stressful. We can focus on Dylan instead of all the travel details.”

Although Dylan’s illness has been hard, they still have time to enjoy family life. “We stay very busy working, going to the beach and playing with friends. We are a happy family! We work very hard to try to stay strong and see Dylan for who he is. You have to see the whole child, not just the illness. Every family has their good days and their bad days,” Karen told us. “Dylan is so full of life. He is always smiling and happy, he makes me laugh everyday! He is braver than me, I am so proud of him. He is a great big brother!”

Although the Zuege family has only stayed at the Ronald McDonald House of Chapel Hill a few times, Karen says “I can’t imagine doing this on our own. Staying here is so wonderful, the staff is so nice and the other families help us keep things in perspective and remind us that we are all in this together. Dylan always gets so excited when we come now, he can’t wait to say hello to Ronald on the bench out front!”