This is a (mostly) retired blog

Julianna Snow

In 2015, I started writing about my daughter. She was four at the time, and under hospice care for a severe form of Charcot Marie Tooth (CMT) , a neuromuscular disease. You can find a selection of old posts in the Blog tab, along with an occasional new one.

I write about life, death and grief…and the magical child who taught me that love is bigger than all of it.

CMT1J:

We finally know the gene mutation that caused Julianna’s CMT!

CMT1J is a new subtype of CMT, caused by an ITPR3 gene mutation. Work is already underway to find treatment. More details soon.