There is no gentle way to welcome you into this “club”.

You’ve already been greeted by the cold reality of your child’s death, and while it may not feel possible right now, some of us in the Smith-Lemli-Opitz Syndrome parent community know just how you’re feeling. We are there, we’ve been there, or we will be there.

A community of support for those like us, those who have suffered this very specific and immeasurable loss, does exist and can be found on Facebook by searching ‘Smith-Lemli-Opitz Foundation – Parent Loss Group’ or clicking this LINK. The parent loss Facebook group is private, and only those who have experienced the loss of a child with SLOS are permitted to join.

Whether you found the SLOS community before or after your child died makes no difference to us, you belong. You are and always will be a valued member of the SLOS parent circle. Your experiences and input are valued, your child matters, and your presence in the ‘Official Smith-Lemli-Opitz Foundation Parent Group’ Facebook group is welcome and cherished.

It can be challenging to figure out where you fit into this community if you have had a child die from SLOS. Our entire existence is centered around research and treatments, managing daily care, tackling behaviors, and accessing support. When that is suddenly stripped from your daily life it can feel as if you are falling through time and space.

The SLOS Foundation recognizes that in addition to supporting families of children living with SLOS there is also a great need to support parents and families that have lost children. While we wish the need for a loss community support group did not exist we are grateful you’ve found us.