The inspiration for the Rare Siblings Project project grew out of a similar resource that focused on the parent perspective: Parenting a Child with a Life-Limiting Illness. During the interview of one of the sets of parents for that video, an older sibling asked, “How come they don’t ever interview us, the siblings, about our experience.”


That sibling was Sebastian, Bella’s big brother, and he gets his say now here. We interviewed him and 4 other sets of siblings. And thank goodness we did. They have a lot to share.



Each sibling story, perspective and experience is different yet common themes emerge, issues of identity, privacy, communication, meaning of life, mortality, challenges of living a full life in parallel with loss and grief. Doctors, nurses, social workers, chaplains also told us they wanted to hear more from the siblings—a population they think and worry about all the time but one for which they lack many resources to be helpful. We hope providers find this project helpful and that it deepens their understanding of the sibling and family experience.