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.

The mother of a 16-month-old with Canavan talks to CPN’s Blyth Lord, describing the process by which her child is participating in a natural history study.

The mother of a 16-month old articulates the challenge that parents of children considering early stage clinical trials face: what is the right decision for my child, in the absence of a crystal ball.

The mother of a 16-month old shares how she is thinking about what she hopes will be the upcoming opportunity for her daughter to participate in a gene therapy trial and what will determine her decision to participate.

The mother of a 16-month old with Canavan expresses the sentiment that all parents of children with rare disease feel: There must be something I can do.

Three groups of siblings speak poignantly about what it is like to be the brother or sister of a child living with a rare, life-limiting disease. Produced for the DISORDER film festival.

Courageous Parents Network follows up with Sherri, three years after the first interview. Sherri shares her decision to place Rachel in a long term care residential home, how Rachel is doing, and how everyone has adapted to this new arrangement.

Jean and Tim share their family memories and the cancer diagnosis of their only daughter Megan. Megan chose to follow the path of hope and gratitude as she fought against this disease. Her parents supported her wishes and continue to work to live a life that Megan would be proud of. Megan left this physical world August 9th, 2014, two days after her 14th birthday.