Media Kit

Photography by James Farlow

Contact Claire

Email: clara.crisp.40@gmail.com
Instagram: londonerinla
Facebook: /claireccrisp
Twitter: @ClaireCrisp1
Pinterest: Claire C Crisp


Bio

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.


Reviews

“Claire Crisp has just articulated the heart of a mother. Her remarkable story is not her own. It is the shared trial of keeping her girl alive and her family intact. Her daily, and nightly, grief, weariness, grit and truth somehow light a path of hope for our own pain. Her ferocity is inherited by her daughter and somehow rubs off on each of us. Thank you Claire for this important work that will surely help others on the journey. Thank you for teaching us how to fight the good fight mighty in battle.”
— Nada Jones, Founder of Live The Dream (LTD/365)
“Time and again, I find myself returning to claire’s stories, and not just because she knows how to create a compelling narrative. I return because Claire’s writing—in all it’s concrete particularity—gives voice to my own struggles both as a parent and as a chronic sufferer (however small they may be in comparison). Yes, these stories are about this woman and these children and this family’s struggle to care for one another in and through a set of incredibly difficult (and unique) circumstances. But that’s exactly the point. Claire’s stories are universal because, in them, we encounter something deeper and more profound: what it means to be a human.”
— Kutter Callaway, Professor at Fuller Theological Seminary
“As a parent of a child with multiple disabilities, the world can often be a frustrating and lonely place. I’ve found a source of comfort and solidarity in Claire Crisp’s work. Her writing is equally vulnerable, beautiful, and insightful. Though her daughter’s needs are significantly different than my son’s, and thus her family’s challenges are different than my own, nevertheless I am reassured through her blog that others stand in sympathetic solidarity.”
— Kevin Timpe, philosopher and writer
“I loved reading your blog, Claire. I have no idea of what it has been like for you and your family but the human-ness of your story is really touching.”
What a harrowing story — love and courage are the two words that spring most readily to mind.
— Sameer Yadav, Professor at Westmont College, CA

Waking Mathilda Synopsis

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.


Interview Topics

I am always happy to consider speaking engagements, appearances and interviews around the following topics:

  • The Pandemrix H1N1 Vaccine. Why we had our healthy 3-year old vaccinated against the Swine Flu Epidemic and how she went on to develop narcolepsy at the same time as 1500 other children.
  • Why the European 2010 Pandemrix vaccine was not tested on children and the consequences of inadequate testing and poor information given to parents. How 1500 children in Europe went on to develop the incurable sleep disorder narcolepsy.
  • Raising the youngest child in the word with narcolepsy. Symptoms,treatments, impact and prognosis.
  • How caring for a chronically ill child impacts on family, siblings and marriage.
  • The writing journey: from clinician to mother to memoirist. What I’ve learned along the way. How I wrote a book whilst being a full time carer.
  • On moving from the UK to the US: Cost, impact, benefits and life in Los Angeles.
  • Why we didn’t take no for an answer when Mathilda was undiagnosed and referred to the psych unit in a British pediatric hospital. A mother’s intuition and her fight for a diagnosis.
  • The difference between socialized and private health care. Comparing the two models within their global context.
  • Why doctors should listen to patients and their parents. The consequences of un-diagnosis and misdiagnosis on young children and their families.
  • Living with extreme sleep deprivation as a child and parent.
  • The benefits of support, community and respite care for care-givers to chronically ill children.
  • How do you raise a chronically ill child to live fully in the light of a 24-hour incurable disorder.
  • Sleep disorders in children. The rising recognition of a previously mis-diagnosed generation.

Behind The Scenes

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.


Speaking

  • “Can the Child with Narcolepsy Thrive?” Narcolepsy Network 2015 (MN)
  • “Finding Your Voice: Blogging, Writing and Advocacy” Narcolepsy Network 2015 (MN)
  • “Our Journey from the UK to the USA” Fuller Seminary Medical Ethics Class January 2016 (CA)
  • “Raising the Child with Narcolepsy—Challenges in Parenting the Chronically Ill Child.” Narcolepsy Network 2016 (FL)
  • “Creative Writing: From Care-Giver to Blogger to Author” Narcolepsy Network 2016 (FL)