Here we are. In the waiting room, waiting to be called back for the first of several diagnostic procedures to determine what’s going on with Molly’s health.

This moment is inviting me back to my resolve to tell molly’s story, in the hopes that our story might help other parents of special needs children.

Molly is 32, intellectually challenged, with epilepsy which is controlled by medication. We have been living in the covid lockdown of 2020 for 9 months. The lockdown has been very hard for molly. She has been showing signs of depression and anxiety. I have navigated her benefits system, communicating with her case managers, to get new supports in place for her: sessions with a psychologist on zoom, a costume party Halloween dance hosted by her special needs camp via zoom.

But then I became concerned about several seemingly unrelated symptoms: she is bruising easily (big bruises on her arms and legs); she has little or no appetite; 10% weight loss (down from size 12 to size 8 and still losing weight); and a strange body odor problem — sometimes I tell her to take showers both morning and evening. So I asked her primary care provider to do a blood test. That’s when things started happening…fast.