Support for moms whose child has a genetic disorder.

Whether it’s a previous baby, grown up baby, or current pregnancy. Or maybe you have a genetic disorder yourself and are worrying about passing it on. This isn’t meant to spark debates but to provide emotional support...or just to post your stories if you’re feeling alone! No judgment here please. I figured I can’t be the only one in this situation!

My story:

My son (14 mos) has Tuberous Sclerosis Complex, a genetic disorder caused by a mutation in the TSC gene that causes benign tumors in the major organs. The tumors cause problems like epilepsy, sometimes autism, among other things. We don’t know yet if this baby will have it or not but will 100% keep baby either way. My husband and I don’t have any signs of this, so there is a lower probability, but still possible so it’s causing a lot of anxiety this pregnancy. Every ultrasound causes actual PTSD since my son’s 30 week ultrasound was so scary. Our son is doing very well despite some abnormal EEGs and gross motor delay, so we’re very blessed. It’s a scary time but also so exciting to add another (surprise) baby. ♥️