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Ellie Fontanetta, Age 9, Spina Bifida
Ann & Robert H. Lurie Children’s Hospital of Chicago
Ellie’s story as told by her mother, Nikki
At 20 weeks in utero, Ellie was diagnosed with myleomengacele an open type of Spina Bifida.
Lurie Children’s gave us more than hope; they opened our hearts back up to feeling joy. When Ellie came into this world she was rushed to Lurie within an hour of her life. Her back was open, spinal cord exposed, nerves damaged, hyper extended knees, club feet, and hydrocephalus and an array of other issues. Lurie took her and took care of her like nowhere else. Everyone from the transport team, to the neurosurgeons embraced us and cared for us and our daughter like family. Ellie had two surgeries within her first few days of life. There were limited expectations as to what she would accomplish. Lurie Children’s taught us how to fight for her. She has defied most odds given to her. With numerous therapies several times a week, she is a successful little girl. She has gone on to walk, learn, and participate in many things with her able-bodied peers.
Ellie has a little sister Mia and as a family, we don’t let anything stop us. We have a rule in our house. We don’t use the contraction “can’t” we say we “can try.” Ellie goes to school with all her neighborhood friends, learns in a regular education third grade classroom making excellent grades. She plays sled hockey, miracle league baseball, dances ballet and tap and is in Girl Scouts. She can do all of this thank to the miracles of medicine, the gift of modern technology, the love of family, and the spirit of hope, all of which was received at Lurie Children’s. They have given us so much, that we give back in anyway we can. We started Hot Dogs for Hope, our charity to benefit Lurie Children’s. Every summer we sell hot dogs at our neighborhood garage sale and every cent goes back to them. At the end of every summer, Ellie delivers that check to the 101.9 36-hour Radiothon for the hospital. Lurie Children’s is not just a hospital. It is a family of doctors, nurses, and staff reaching out, hugging you, and caring for your whole family.
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