Emerson's Fight For An NPC Cure

Emerson Rose Schrivener was born to Nick and Destiny.
She was diagnosed with a very rare Nuero-Degenerative disease called Niemann-Pick Type C. This disease has been called "Childrens Alzheimers" and eventually the disease eats away at the nuerological system and functions such as fine motor skills, cognition and is eventually fatal. She loves playing with her sisters Raelynn(8 and Harper(4) She loves peppa pig and animals. 
We are in the fight for her life but we need help! Children's Mercy just approved Emerson to start receiving a drug that is not FDA approved. She will start receiving weekly lumbar punctures in August. She has weekly appointments with a speech therapist and is followed closely by many other specialty doctors.