Pinterest: Claire C Crisp
Claire Crisp is the author of Waking Mathilda, a memoir of her daughter’s journey from the UK to America in search of life-changing medical treatment for the sleep disorder, narcolepsy. She is also the recipient of the 2015 Patient Awareness Award by the Narcolepsy Network of the USA in recognition of her work as an advocate for children with narcolepsy. Originally from England, Claire trained as a physical therapist at St Thomas’s Hospital, London, and practiced as a clinician for a decade in the British National Health Service and private healthcare. In 2010 her third child, Mathilda, was diagnosed as the youngest person with narcolepsy in the world. The search for adequate treatment took Claire and her family to numerous specialists in the UK, and eventually to California, where Mathilda received life-changing care at Stanford University. Claire now lives in Los Angeles, blogs at claireccrisp.com, and is a regular conference speaker in the US.
In January 2010, Mathilda Crisp a vibrant, articulate and healthy three-year old received the H1N1 Pandemrix Vaccine. Within weeks she began to display a bizarre plethora of neurological symptoms that left doctors baffled and her parents distraught as she began to hallucinate at night and suffer with unrelenting sleep attacks during the day. After multiple failed hospital admissions the team of Neurologists gave up on both Mathilda and her mother Claire and handed them both over to the Psych Unit. Determined to prove her daughter was not mentally ill, Claire showed video footage of Mathilda collapsing whenever she experienced joy, to a young doctor from India. In an extraordinary turn of events, the brilliant Dr. Shah recognized Mathilda’s symptoms as narcolepsy—an incurable sleep disorder never seen before in a child so young.
In a riveting, and emotionally gripping narrative, Claire Crisp tells the story of her family’s quest to provide life-changing treatment for their youngest child that ultimately led them to the Stanford Center for narcolepsy research in California. Leaving their lives, home and families back in England, the Crisp family began a new journey; one that explored suffering, sacrifice, loss and love as immigrants on the West Coast of the US.
I am always happy to consider speaking engagements, appearances and interviews around the following topics:
Why I wrote Waking Mathilda—A Memoir of Childhood Narcolepsy
I wrote Waking Mathilda to testify to the courage of young children with chronic illnesses, raise awareness of narcolepsy and share challenges of caring for a chronically ill child and the impact on family life. I also wrote the book to expose the dangers of giving untested vaccines to children and the difference in treatment options between socialized (UK) health care and private (USA). It is a story that explores the universal themes of suffering, perseverance, determination, heart break, risk and hope.
For more on background, listen to this podcast interview with Kutter Callaway.