Sera Johnston - Danas Walk

DANAS WALK

Sera Johnston

DANAS WALK

First published in 2012 by

Ecademy Press

48 St Vincent Drive, St Albans, Herts, AL1 5SJ

www.ecademy-press.com

Printed and bound by Lightning Source in the UK and USA

Designed by Julie Oakley

Printed on acid-free paper from managed forests. This book is printed on demand, so no copies will be remaindered or pulped.

ISBN 978-1-908746-37-5

The right of Sera Johnston to be identified as the author of this work has been inserted in accordance with sections 77 and 78 of the Copyright Designs and Patents Act 1988.

A CIP catalogue record for this book is available from the British Library.

All rights reserved. No part of this book may be reproduced in any material form (including photocopying or storing in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright holder except in accordance with the provisions of the Copyright, Design and Patents Act 1988. Applications for the Copyright holders written permission to reproduce any part of this publication should be addressed to the publishers.

This book is available online and at all good bookstores.

2012 Sera Johnston

To my mum: for not appreciating you as

much as I should have done.

C EREBRAL palsy is a movement disorder that is associated with muscle stiffness (spasticity) and delays in motor development. Spasticity can range from mild to severe and can appear to worsen with age and growth, causing muscle contractures and regression of walking and other functional motor skills. There are many treatments for spasticity, including physical therapy and bracing, botox injections and oral medication. Early intervention is very important for children with spastic cerebral palsy. If muscle contractures develop, orthopedic surgery may be necessary. Selective Dorsal Rhizotomy was developed and refined to permanently reduce or eliminate spasticity in some children and adults with spastic cerebral palsy. This surgery does not cure cerebral palsy and demands a monumental commitment from the child and family. Functional outcomes are predicted and based on the childs age and level of disability at the time of surgery, and progress is hallmarked by hills, valleys and plateaus. Patients are expected to participate in a minimum of 4-5 hours of physical therapy each week for strengthening and re-education of posture and gait, as well as a daily stretching and home exercise program. Families are also encouraged to incorporate standing, walking and recreational activities into their childs daily routines. This can be disruptive to families and finding a balance with school, friends and other obligations can be challenging.

In this extraordinary book, Sera Johnston shares the life story of Dana, her 14 year-old daughter who is living with spastic cerebral palsy. Due to her cerebral palsy, Dana found it increasingly difficult to do basic aivities such as sitting, standing and walking. But her Mum never gave up hope to make Danas life better.

Despite previous excellent treatment, Dana developed increasing spasticity in her legs from her cerebral palsy as she grew. She excelled academically at school but her walking ability continually deteriorated. By the time she entered high school, she was mostly in a wheelchair.

In the summer of 2010, Sera heard about a neurosurgical procedure called Selective Dorsal Rhizotomy (SDR) that we offer to children with a ecific type of cerebral palsy, i.e. spastic cerebral palsy. She organized multiple fundraising events for Danas surgery. In August 2011, our team met with Dana and her family at our hospital, St. Louis Childrens Hospital in Missouri. Dana and her parents were extremely articulate and well prepared for the surgery and post-surgical rehabilitation protocol. Dana was our 2,192nd patient in total and 88th from the UK.

We believed that Dana would benefit from SDR surgery and could walk indoors unaided and walk outdoors with crutches after the surgery. SDR surgery on Dana was successful, and in eight months, she was able to walk unaided indoors, and she now walks with crutches outdoors.

Sera Johnston is remarkably open about her daughters cerebral palsy. This book is filled with frank and detailed descriptions of the severe frustrations and great triumphs at different stages during her daughters development. Her dealings with complicated school and healthcare systems in order to help her daughter are so well illustrated. Her experience with modern treatments for cerebral palsy is accurately explained. She also describes her successful fundraising due to the amazing generosity of her community.

Sera Johnston offers a touching and realistic narrative of how spastic cerebral palsy affects the lives of children and parents. Thanks to Sera and Danas openness and courage, this unique book will offer assistance and support to children and parents around the world who have to fight daily against spastic cerebral palsy

W ITH the impending arrival of Sera and Glens first child, thoughts turn to imagining who their daughter will resemble and excitedly discussing the future as a new family. Baby furniture sits in the empty nursery and baby clothes fill the wardrobe and chest of drawers. Three days later than the predicted due date, Dana Amelia is born.

The future has turned into a future of uncertainty and fear. The hopes and dreams of new parents are quashed; suddenly they enter a world that is unknown to them that they have no experience of. A divide emerges between mothers Sera in one world new mothers in another.

Despite the treatment options that are met with resistance from the medical profession, Sera and Glen are determined to give their daughter the best quality of life. They discover only by chance a treatment that will ultimately change her life.

This is a true story of mothers journey of bringing up a child with a disability, and also a coaching book supporting mothers experiencing a similar journey.

T HIS book would not be possible without the positive impact St Louis Childrens Hospital, Missouri, USA has had on Dana and us as a family. We are forever indebted to Dr Park and his team, Dr Dobbs and his team and the physiotherapists for their skill, professionalism and care we experienced during our stay. Our thanks also extend to all of the other staff of the hospital who have in their own way made a difference to Dana.

I would like to say a big thank you to the staff at The Residence Inn, Downtown, St Louis for their support, all our chats in the foyer the highs and lows and for making our stay homely and less stressful. To Stephanie for agreeing to be a critic of this book, and for caring.

Thank you to Ann and David, without that conversation on that day Dana would not be where she is today.

A big thank you to three very ecial ladies who gave us hope and believed in Dana in her toddler and junior years. Kay, Ester and Sarah you are unique and ecial individuals.

To all my critics who gave up their time and gave honest feedback on this book. I am truly grateful.

To the staff in Esquires Coffee House, Sutton, who allowed me to sit for hours writing this book. For your encouragement and support throughout our fundraising campaign and to this date.