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Claire Wylds-Wright

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Waking Mathilda: A Memoir of Childhood Narcolepsy Kindle Edition

by Claire Crisp (Author) Format: Kindle Edition

4.7 301 ratings

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A native of England, Claire Crisp had it all—a strong marriage, three healthy children, and her own home in Bristol. Then came the H1N1 flu pandemic of 2009. It took only vaccine—one seemingly innocuous vaccine to Mathilda, the baby of the family—to change their lives forever. Diagnosed at age three as the world's youngest child with narcolepsy, the joyful and energetic Mathilda rapidly dissolved into someone unrecognizable.

In this compelling narrative, Claire Crisp chronicles the fight for Mathilda's treatment. Leaving their family and country in England, the Crisps begin a new journey—one of faith, of loss, and of love as immigrants to the western shores of the United States.

Product details

ASIN ‏ : ‎ B06W584QT6
Publisher ‏ : ‎ Palace Gate Press (February 16, 2017)
Publication date ‏ : ‎ February 16, 2017
Language ‏ : ‎ English
File size ‏ : ‎ 2575 KB
Text-to-Speech ‏ : ‎ Enabled
Screen Reader ‏ : ‎ Supported
Enhanced typesetting ‏ : ‎ Enabled
X-Ray ‏ : ‎ Enabled
Word Wise ‏ : ‎ Enabled
Sticky notes ‏ : ‎ On Kindle Scribe
Print length ‏ : ‎ 304 pages
Page numbers source ISBN ‏ : ‎ 0998694029

Best Sellers Rank: #687,917 in Kindle Store (See Top 100 in Kindle Store)
- #581 in Biographies of Medical Professionals (Kindle Store)
- #2,043 in Medical Professional Biographies
- #7,742 in Memoirs (Kindle Store)

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4.7 301 ratings

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Claire Wylds-Wright

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Born and raised in London, Claire Crisp practiced as physical therapist in the National Health Service and in private practice. She went on to teach her three children at home for next decade in Scotland, the US and England. From 2010 onwards Claire has been a full time care-giver to her daughter Mathilda who developed narcolepsy as a result of the H1N1 vaccine. The family moved from their home in England to California, securing treatment for Mathilda at the Stanford Center for Narcolepsy research. She is an award winning advocate for children with Narcolepsy, a speaker and blogger.

Her story has been featured in the Daily Mail, the i news and on National radio. Waking Mathilda is her fist book.

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Kindle Customer

Brilliantly written!!

Reviewed in the United States on January 20, 2020

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What an excellent book! With deep feeling and clarity, Crisp describes the challenges of having a sick child and fighting for care the child needs to survive. The impact on her family, her marriage, her emotional stability, and her faith is both penetrating and sobering, yet somehow expressed without lasting bitterness as one might expect. As well, there were no great revelations, no profound discoveries of God in suffering; just honest inner turmoil and confusion, coupled with the desire to hold on no matter what; a mother's struggle to cope and hope against seemingly impossible odds, while keeping her family together. Though a Christian, I understand that faith can be trying, and life immensely hurtful and frustrating. In such times, Bible texts can sound like empty platitudes. How do parents believe when watching their child in pain, knowing God can relieve that pain yet chooses not to? Who smiles with confidence and peace in moments like this? It's hard. It's heart-breaking. It's angering beyond words. One feels this in Crisp's telling, the terrible grief she went through. And yet, without proselytizing or glossing over her crucible, she shares as one who has survived, learned, and grown emotionally and spiritually. Together with her supportive husband and older children, she persevered by believing still and doing when there was every reason to doubt. That is faith in the truest and most practical sense--not tranquil bliss but prayerful warfare, to keep fighting and never giving up. Ever. For God promises no one a life of ease, but the strength to do what one must and endure. And it is in the hour of endurance that He seems, to us, the farthest away, and most silent. Crisp, you endured, your family endured, and the world is better for it. Thank you for your courage, and for shedding light on the issue of narcolepsy, a disorder which, before now, I knew nothing about. I pray your story helps to inform the medical world and bring courage and hope to other families. Rest assured that in all those respects, you are an inspiration to me.

2 people found this helpful

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Julie L Flygare

Must-Read to Understand Narcolepsy & Family Impacts

Reviewed in the United States on August 2, 2023

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Enlightening, heartfelt and honest! This is a MUST-READ book to understand narcolepsy and the challenges of finding an accurate diagnosis and good treatment. Claire's grace and honest writing style draws you in as a reader, you feel as though you are right next to Claire and Mathilda, on the edge of your seat, as they navigate various hospital rooms, etc. Thank you to Claire and Mathilda for all they are doing to spread awareness and increase empathy toward this misunderstood condition.

One person found this helpful

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Lisa Glenn

Tru reflection os Narcolepsy

Reviewed in the United States on August 15, 2023

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As a person who is all too familiar with this illness, I can say that this author is spot on in her description of symptoms, difficulty in getting diagnosis and difficulty in obtaining treatment. In my youth I knew of Narcolepsy as most of us did, one caught it as a result of receiving a bite from a Tsetse fly, now known as sleeping sickness. In midlife I learned so much more first hand. There are a few significant issues not addressed herein for the patient, understandably due to her youth. Many of us have the genetic marker and live long lives with no indication, other have onset with no clue as to why. Along with the issues addressed many of us struggle with anxiety, depression and PTSD. We are constantly fighting weight issues as our metabolism is slower and we must address employment (whether we can or cannot work, driving, yes or no. And maybe most significantly with later onset are the realizations of the things we can no longer do, those that were so common to us (swimming, going places alone or living alone, recalling memories and being treated with love ). If you have believe that you have narcolepsy, reinforce your spine and knowledge because you are in for a fight for diagnosis and treatment. Ensure that those around you are committed to a long and difficult journey. Build your support team and do all within you to be an emotionally healthy person.

One person found this helpful

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Holly227

Hope for us all

Reviewed in the United States on April 12, 2023

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This book was so touching. As a mom with a daughter who has narcolepsy it was refreshing to know I wasn’t alone. However, it was also heartbreaking that our babies deal with this and I cried several times while reading. I am thankful for what we have to help them and pray for a cure. Thank you for sharing your story.

One person found this helpful

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Lorie Cunningham

Fascinating inside look at the debilitating condition of Narcolepsy

Reviewed in the United States on January 25, 2018

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This mother is a gifted writer who shares her family’s struggle to get the help they need for their daughter who suffers from Narcolepsy. She shares from her heart what it’s like to watch a child suffer and to feel so helpless. Very well written and much needed information for those who are battling this confusing, cruel condition.

One person found this helpful

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Tandra Nystrom

An Extraordinary Puzzle Piece

Reviewed in the United States on September 30, 2022

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The words on these pages hit me in some of my most vulnerable and tender places. I was diagnosed with type 1 Narcolepsy in 2018, with over 12 years of misdiagnosis. This book brought me so much comfort in knowing I’m not alone. It allowed me to reflect back on moments as a child where I would experience some of the very same things as Mathilda, as well as the trauma that it’s left me with.

I can’t help but question if a childhood dog bite and series of rabies vaccines could’ve been the culprit to my diagnosis as well?

I have been so misunderstood, misdiagnosed, and have felt “tired” of missing out on life. I was a teacher for the past 10 years, and with that, felt major adversity and isolation at times. I’m currently in a season of reflection, healing, and rest as I take time away from the classroom.

I’ve been facing some new symptoms, ups and downs with medications and treatment, but after reading this, I feel even more inspired to advocate and shed light on Narcolepsy awareness.

Claire’s eloquent words, knowledge, and compassion will provide encouragement and perspective to those battling or know someone battling with invisible chronic illnesses.

You won’t want to put this book down!

2 people found this helpful

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Top reviews from other countries

J Steen

A Must Read For All Parents of CWN

Reviewed in Canada on July 12, 2018

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This book found me at exactly the right time. As a parent of a CWN, everyday is a challenge for her, for me and for our family. No one understands the depth of frustration at not being able to fix her brain and make her better. That is until I read Claire’s book. She understands. I’m not alone. Claire is a masterful writer, a champion of the family and an educator on narcolepsy. I laughed; I cried; I celebrated her ability to put into writing exactly how I felt thousands of miles away. If you have a CWN, buy this book along with a box of tissues and prepare to join a community of hope and support for people with Narcolepsy.

Philip Mayo

This is a story that everyone should read, not only people touched by this illness.

Reviewed in the United Kingdom on June 18, 2018

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My granddaughter, age 5, was very recently diagnosed with narcolepsy / cataplexy. The utter shock, grief and confusion for her parents and for me and my wife, and all our family, is impossible for me to explain. And the little girl....why do these things happen to totally innocent children? And why is medical awareness, and intervention, still so poor? As a family we are all trying to find out what to do, how to help, who to turn to.
An adult we know through a friend has narcolepsy and while reaching out to us in a most generous and kind way she said, "read Claire Crisp's book, "Waking Mathilda"". Which I did. My wife and other family members also bought their own copies. It is a truly harrowing story, but an inspiring read, which both broke my heart even more but at the same time gave me hope. How was it possible for such a vulnerable family to have been treated in such a horrific, incompetent and callous way by the so-called leading lights of the medical profession? We all know that a reputation for arrogance and cold aloofness seems to be a necessary part of these "consultants" qualifications - not all, but in my experience over the years, far too many. Can we not even hope for a little kindness?
This book tells a story that one might have expected to relate to the 1920's, when modern medicine was in its infancy. But this happened in 2010 !!! Claire Crisp and her husband Oliver have blazed a trail for all sufferers and all families connected with this very frightening condition, awareness of which remains very low and which is even treated sometimes in the media, films etc. as a bit of a joke. It is far, far, far from being a joke. Just imagine if your little son or daughter had such a debilitating condition and the best doctors in the land told you it was down to your bad parenting and even wanted to refer you, yes, you the mother or father of the child, for psychiatric evaluation !! That is part of what Claire Crisp went through. But her courage and that of her husband, their refusal to accept the prevailing "medical wisdom", their determination to find the best solution possible for Mathilda is quite breathtaking. I don't think one in a thousand could have done this. Theirs is an achievement on a par with the highest excellence in any field or discipline. We own her a great debt.
Claire has a blog at claireccrisp.com where there is a lot of very useful information about narcolepsy and also podcasts at Narcolepsy 360. We are only about two weeks into this situation and we are determined to educate ourselves as fast as possible so that we can be of real help to our granddaughter , her mum (who is our daughter), her dad and baby brother. Claire's book, blog and podcasts have been of immeasurable help in starting us on this long road
This is a story that everyone should read, not only people touched by this illness. For those of us who are touched by narcolepsy / cataplexy it gives us guidance and hope. For those who are not it will give inspiration and courage to face the hardest challenges that life may present.

4 people found this helpful

Amazon Customer

For parents of autoimmune children everywhere.

Reviewed in the United Kingdom on July 15, 2019

Verified Purchase

Claire is a superb writer. I was interested to read this book to find out more about narcolepsy on a professional level but like Claire I am an NHS professional with a young daughter who developed -at the exact same age as Matilda - a devastating lifelong autoimmune condition. The book really struck a chord with me on a personal level. The emotions & experiences she describes are something that I wholly identify with. From the petite, failure to thrive baby girl to the onset of autoimmunity just before her third birthday, shortly after we relocated. A mother's guilt (for us, wishing I had never taken that job that moved us across the country, the sheer exhaustion, the worry about impact on siblings.the agonising wait for a diagnosis & to be believed. Being 'that parent' in the eyes of fellow NHS professionals (a very painful realisation). Our journey took us to the middle east rather than the states & our daughter is now thriving. No one would know that she used to suffer from crippling arthritis and was at risk of going blind. But it takes a lot of care and more guilt to keep her that way ( no triggering foods etc at children's parties). The uphill battle in England against starting DMARDS and the encouragement from our Arab doctors to keep going the way we are. I see so many similarities to our situation. Our daughter like Matilda is a 'Little Lady', bright and chatty but a tad stroppy and tired at school! Thank-you for your writing Claire. You surprised me and made me cry (a lot) but it is comforting to know that my little girl is not alone.

One person found this helpful

Mary

A very touching story.

Reviewed in Canada on October 3, 2017

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A very well written and informative book. Written from the heart, it is a very emotional story. I could not put it down because I needed to know there was a solution to this horrible condition.

JoBa

Compelling refusal to give up

Reviewed in the United Kingdom on April 20, 2017

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I raced through Claire Crisp's Waking Mathilda in a couple of days. Having been there for some of the story, it helped to fill in the blanks of which I was unaware and to piece the story together into the unstoppable drive for the truth that it is. A real life account of the passion and drive that compels parents to pursue medical explanation against all the odds, Claire and Oliver refuse to contemplate anything less than total commitment from themselves and the agencies that support them. The Crisp family, and those professionals who listen carefully and patiently, shine through with love and unity and, although life is changed beyond all recognition, a new direction is found.

Waking Mathilda is also a terrible indictment of the shortcomings of a medical system where the genuinely curious mind, fascinated and objective enough to recognise something truly unusual in front of it, can practise its art without exhaustion, and fear of missing the tick boxes, protocols and financial targets which stalk doctors and stifle original thought and, as in this story, result in the outrage of blaming the patient and family for their own condition.

I am humbled to have been part of this story, I am honoured to know this family and I would heartily recommend this book to anyone who loves and cares for a family member with a chronic condition. There is hope but sometimes it takes a very long time to find it. Claire did and tells how with eloquence and selflessness.

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