Owen was born in 2007 to Anita and Rick after a completely normal pregnancy and delivery. At first his parents thought they had been blessed with a healthy baby boy, but from the beginning Owen had trouble feeding and soon his mom began to suspect that something was wrong. At four months of age Owen and his family began a long summer of doctor visits and testing. At seven months of age Owen was diagnosed with polymicrogyria and at 11 months of age with mitochondrial disease. As a result, Owen suffers a multitude of symptoms from seizures to respiratory failure.
When Owen was eventually diagnosed, his doctors were not optimistic about his prognosis. They told his parents his life expectancy was probably about two years and they warned them not to “chase rainbows looking for a cure.” Owen, however, had his own plans. He is now six years old and began kindergarten this past September. He also plays baseball for the Miracle League on team “Tigers.” His mom says he absolutely loves school and baseball! Owen is unable to speak, but he is a very happy child and his joy is contagious. So much so, that Owen was chosen as the Mile 18 Children’s Champion for the Columbus Marathon this year.
Owen is currently enrolled in the Nationwide Children’s hospital home based palliative care program. Owen’s team includes physicians, nurses, a social worker, massage therapist, and a chaplain who work to maximize Owen’s quality of life by helping Owen’s family manage his daily medical needs and by providing psychosocial and spiritual support to him and his family. Owen’s family states that the medical support and the coordination of Owen’s care is invaluable. “We are able to call a nurse 24 hours a day and they will help us troubleshoot whatever is going on with Owen. This helps us keep Owen home and out of the ER. The support of the social worker and chaplain has been really wonderful too. The entire team truly understands what it takes to care for Owen. Palliative care is the best thing we have ever done.”