About Claire

 
 
 

Author, Advocate, Mother

Claire Crisp is an award-winning author and advocate for children with the sleep disorder, narcolepsy. Her book Waking Mathilda—A Memoir of Childhood Narcolepsy charts her family’s journey from the UK to the USA in search of life changing treatment in an attempt to rescue their youngest child Mathilda, who developed narcolepsy following the 2010 H1N1 vaccine.

 

 

About Mathilda

 
 
 

5th-Grader,
Cat Lover,
Bookworm

Hi, my name is Mathilda. I am 10 years old and live in Pasadena. I was born in a bath tub in Bristol, England. My Mum says there wasn't time to fill the bath with water so my dad caught me in a towel to keep me warm. After that his hair turned really gray.

When I was three I developed narcolepsy and cataplexy which meant I had to go in to hospital for lots of tests. I don't remember much about that time as I was so sleepy but I do remember moving to America when I was 5 so that I could get treatment at Stanford Center for Narcolepsy Research.

Being on good medication means I can go to school and church and have friends over. I love Latin, reading, Greek Mythology, and playing with Marie-Grace my American Girl doll.

At night I tell myself and my teddy-bear Cocoa stories which helps calm me down when I have bad dreams. My mum and dad also help me and take it turns to do my doses of Xyrem each night.

Liberty is my older sister and I don't want her to go to college because it will be sad without her. Elliot is my older brother who is addicted to gaming. If he goes to college then I will get my turn on the Wii.