Has anyone been a carrier for SLO?

I just got the results of my genetic screening and it turns out I’m a carrier for Smith-Lemli-Opitz Syndrome. Apparently it’s not very common, my doctor has never seen a baby born with it.

I’m a carrier, and it’s recessive, so the baby’s father also has to be a carrier, but I’m freaking out a little.

Has anyone else been diagnosed with this and can share their story??