This booklet was created by the DDBP-Family Advisory Council (DDBP-FAC) and accomplished through a generous grant from the Jack Rubinstein Foundation. The DDBP-FAC sought families to tell their story with the goal of “Sharing Hope” with other families who may be coming into the CCHMC-DDBP division to gain a better understanding of what may be going on with their child, and building strategies to guide next steps, to share and for some to regain hope.
It is the hope of the DDBP-FAC that these booklets will be able to support newly diagnosed families and families that are looking for hope during difficult moments along their journey.
To appreciate and acknowledge the generosity of the families that participated in the booklet, the DDBP-FAC hosted a celebratory event in early March, and had over 110 people in attendance. The majority of the attendees were the participants and their family members that had shared their stories.
On the evening of the unveiling of the “Sharing Hope” booklet, the CCHMC-DDBP office conference area transformed into a night at the Oscars, complete with a red carpet runway, flashing lights of the cameras, children and families dressed to the nines, ready to be honored for their contributions to the booklet. One highlight of the evening was the opportunity to receive autographs from the patients themselves as it is through them that their stories were told.
Susan Wiley, MD attended the celebratory event and shares her perspective. “I had the opportunity to see the culmination of a year’s work through the creation of this booklet, but in truth, it is really many lifetimes of work.”