Today the landscape for families of children diagnosed with rare and fatal conditions looks very different than it did even a decade ago.

New therapies and treatments are here, including gene therapy.

But what do the innovations mean for parents who may be faced with the opportunity to enroll their child in an early stage clinical trial which is, at its core, an experiment?

In this episode, CPN’s Blyth Lord, whose daughter did not live to see the new possibilities, talks with Dawn Mariano, a mom who will be facing such a decision for her baby daughter.