If your child has been newly diagnosed with Smith-Lemli-Opitz syndrome (SLOS), you are likely feeling a mixture of emotions, from fear of future unknowns regarding your child’s health and well-being to relief that you have finally been given a diagnosis, often after years of searching. You may be feeling overwhelmed with all that there is to learn about SLOS, a syndrome so rare that you probably had never heard of it. You may be seeking direction on what to do next. As you have landed here on our support page, you are likely seeking some hope, and maybe a lifeline to help guide you as your family embarks on this journey.
You have come to the right place. You are not alone.
The Smith-Lemli-Opitz Foundation offers a network of SLOS families scattered all over the world, united by our shared love for our children. We can likely introduce you to someone who speaks your language and lives in your part of the world. If you wish, we can connect you with a mentor family.
You may have begun a deep dive into Smith-Lemli-Opitz syndrome, learning everything you can. There is much to absorb! Often we parents need time to learn and digest the vocabulary and information. As you learn about the disorder, you will discover that SLOS exists on a continuum from mild to severe. Our kids are unique individuals with many differences from one another while also sharing many common traits.
If your child is a newborn or toddler, you may wonder where they fall on the mild to severe range. What milestones will she reach and when? What challenges might he face as he grows up? While your child’s medical team may attempt to place your baby somewhere on the mild to severe continuum, your child’s development will unfold slowly over the years. We recognize that living with the uncertainties of your child’s future is difficult. As parents, we’re told that no one can say how our child will develop, and that we must wait to find out. We recommend that you focus on the love that you have for your child and on what they can do. Feelings of despair and worry for the future are dampened when we look into the eyes of our children. The joyous smiles of our kids with SLOS will light up a room and remind us to be present and accept what is today.
Adjusting to this new world of Smith-Lemli-Opitz syndrome will be an ongoing process. Please be kind to yourself and give yourself the time you need to reach a place of acceptance. Reach out to other SLOS parents! You will encounter empathetic people who understand and who will offer an ear and maybe even some humor. We promise that you will find your way through this unexpected family journey. And the Smith-Lemli-Opitz Foundation board and our member families stand ready to support you in any way we can.
On behalf of the Smith-Lemli-Opitz Foundation,