“Imagine a three-year-old little girl. She should have no care in the world other than which doll she might play with or what color crayon to use to draw. Our daughter Ella wasn’t doing those things. Instead she was dealing with a very large, distended, and hard abdomen due to inability to produce bowel movements, a full gallon of fluid retention, and air stacking. She was vomiting, had loss of appetite, fecal incontinence, and was lethargic,” says Ella’s mom, Jamie.
After 8 months of surgeries, procedures, testing, nasogastric tubes, physical examines, medications, and more, Ella’s condition remained undiagnosed. She was referred to a local hospital in New York and then one in Boston where Ella was diagnosed with gastroparesis. When the medication was unhelpful, Ella’s family fought their way through hurricane Sandy to return to Boston for further testing. This time they learned Ella also had colonic neuropathy pseudo-obstruction. “Basically, Ella’s colon is unable to push contents through it,” says Jamie.
Neither a new medication nor cecostomy tube placement were helpful. Little Ella continued to be in daily pain. Finally, she was referred to Dr. Di Lorenzo, Medical Director for the Center for Colorectal and Pelvic Reconstruction, and Medical Director of Gastroenterology, Hepatology and Nutrition at Nationwide Children’s Hospital. It was here that another piece of Ella’s puzzle was confirmed. Dr. Di Lorenzo created an action plan that Ella could take to her gastroenterologist back home in New York. While back at home, Ella underwent ilesotomy surgery. Since then, Ella has been feeling better and looking forward to Dr. Di Lorenzo’s next plan – ileostomy reversal. Due to the complexity of a partial colectomy, Ella will be having the surgery at Nationwide Children’s under the guidance of Dr. Di Lorenzo.
“Dr. Di Lorenzo gave us hope that Ella wouldn’t live in daily pain and would be able to do normal kid activities. From the moment we took our first steps in Nationwide, we knew we were where we needed to be. We are so very thankful for Dr. Di Lorenzo, the Motility Clinic, and Nationwide Children’s. Through sharing Ella’s story, we have met other motility families and have suggested Nationwide because of our experience. We truly believe Nationwide is a leader in the motility field. Ella struggled for a very long time and it wasn’t until Nationwide entered our lives that everything began to change for Ella,” says Jamie.
Today, Ella is resilient, happy and determined. She loves swimming, ice skating, arts and crafts, reading, playing with her brothers and friends, giving back to others, and most of all she loves to make other people happy. “She is strong, focused and positive – a fighter full of love and compassion,” adds Jamie. In other words, the perfect person to greet participants along the course of the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon to give them inspiration and energy.
Follow Ella’s story at her facebook page, Ella’s Grace, for updates on her mile at the Nationwide Children’s Hospital Columbus Marathon & 1/2 Marathon.