My daughter was just diagnosed with a neurodegenerative disease. How I do cope?

Where do I turn? My husband and I can't stop crying. I am having a hard time looking at or being with my daughter. She is near two, perfect, beautiful, so sweet, just behind on all her milestones. Genetic testing led us to this - WDR45 mutation, leading to BPAN. She will gain some skills until she loses them around 12 - 20 then she'll decline slowly from there. I can't believe this is my real life. This cannot be real. I cannot go on. I have no strength.​Please help direct me to any subreddits with this sort of issue, I need all the help I can get. via /r/Parenting http://bit.ly/2GXCaBH