Lily Putney was born without health issues. As a 15-month-old, however, an ear infection spiraled out of control and resulted in a viral inflammation of the brain, leading to seizures and brain damage. Now 15 years later, Lily remains non-verbal and non-ambulatory, and still suffers from almost daily seizures. However, despite challenges, her family sees her life as full of purpose.
“Having a child with catastrophic disabilities is extremely difficult, but we are like any other responsible family,” says Anthony Putney, Lily’s father. “We all have dreams and goals, and, despite Lily’s disabilities, we want her to be a participating member of our family. After all, like each of us, she has something to contribute, and it’s our job to make sure she is able to reach her potential.”
In the July 2015 issue of Health Affairs, the leading journal of health policy, Anthony shares the details of his family’s ongoing journey navigating complex health care and insurance issues. (Listen to Anthony read his story at the Health Affairs podcast.)
The Putney family’s story showcases the challenges of coordinating care for a child with medical complexity, especially when moving among different state Medicaid programs and when crossing state lines for care.
As a result of their experience, the Putney’s have also worked hard to advocate at local, state and national levels for other children like Lily. Anthony and Lily came to Washington in 2013 to participate in the Children’s Hospital Association Family Advocacy Day to share her story with members of Congress. Anthony returned to Washington in 2014 to speak at a House briefing leading up to the introduction of the Advancing Care for Exceptional Kids Act (ACE Kids Act).