“As with his birth and at different times during his life, Michael’s death and all related aspects threw our family onto an emotional rollercoaster. Although naturally shy, I had found the best way to cope was to try to be brave and seek support. The end was no different. Simply sharing the events as they unfolded by phone or email brought strength and guidance from family, friends, the CdLS online support group and especially the CdLS Foundation staff.”
–Excerpt from When Angels Take Flight: The Loss of a Loved One with Cornelia de Lange Syndrome
The CdLS Foundation staff is here to provide guidance on the complicated journey you have ahead of you after losing a loved one with CdLS. Staff is here to listen, honor and remember your loved one. It can also be helpful to connect with others who have experienced a similar loss. The Foundation has a network of caring families who serve as grief support volunteers whom we can connect you with when you are ready. Please do not hesitate to contact one of our family service coordinators at 800.753.8166 or familysupport@CdLSusa.org.
Resources for Parents:
The Compassionate Friends
A nationwide non-profit designed to provide resources to families who are coping with the death of a child.
Bereaved Parents of the USA
Connects grieving parents with other bereaved parents, grandparents and siblings for one-on-one support.
Provides downloadable PDF resources of grief support information that were created for everyone, suitable for children to adults.
Offers a wide variety of articles about general grief and bereavement.
To help understand the grief of children:
National Alliance for Grieving Children connects professionals, consumers and volunteers whose mission is to support children and teens through the grieving process.
For Children and Teens:
The Dougy Center offers peer-to-peer support groups and resources for grieving children, teens, and families.