Pompe and Me Written by Julie Garfield Illustrated by Ben Lock
Credits Poem and Concept Art by Julie Garfield Design and Illustrations by Ben Lock Editing by Allyson Lock Text Copyright© Julie Garfield 2024 Illustrations Copyright© Ben Lock Graphic Design 2024 Published by: SlowMo Publishing Studio 2024 A catalogue record of this book is available from the National Library of New Zealand. ISBN: 978-0-473-71190-0 (PB) ISBN: 978-0-473-71191-7 (KDP) ISBN: 978-0-473-71192-4 (PDF) All rights reserved.
Resources for Caregivers There are many resources available online for people with Pompe. Here are a few examples; Facebook groups: Hope Travels - Pompe Awareness Pompe Friends Pompe Alliance Pompe Meetings Upcoming Pompe – Diet and Nutrition – Ideas and Recipe Group Hints and Tips for living with Pompe Websites: New Zealand Pompe Network https://www.nzpompe.network International Pompe Association https://worldpompe.org
Notes My Mutations: My Doctor’s Information:
This Book Belongs To
Foreword By Julie Garfield Pompe disease is an invisible disability in the beginning and can take years to diagnose. It is also a dynamic disability with symptoms on a spectrum so it can vary daily. What you did easily today, you may not be able to do tomorrow. Every movement takes several times more energy than the average person and so we tire easily. The main things we want are to be believed, and to be asked and included. Why did we choose a sloth? They have a slow metabolism but adapt and persevere, and they are rare, just like us.
Thank you for listening to what I’m going through, I need your understanding, I can’t do it without you. If there’s anything you don’t understand, ask me at the end, thank you for supporting me and for being my friend.
To the pioneers taking part in clinical trials - thank you. To the parents juggling the complex medical needs of a child with work, family and everyday life, and managing to make it look easy - we see you and appreciate all you do. I’d like to thank Allyson Lock and the New Zealand Pompe Network team for getting this project off the ground and for making it so enjoyable. Dedications by Julie Garfield
I have this condition but I’m not to blame, we are all affected differently, no two people are the same.
I have a condition called Pompe, that tries to stop me when I play. I can see, hear and think, just like you, but sometimes there are things I cannot do.
Even if I can’t take part and do what you do, I still want to play and be just like you.
Like running fast or climbing stairs, jumping over puddles or getting out of chairs. When I go to bed and when I wake, my muscles are stiff and often ache.
I try my hardest every day, but sometimes I can’t join in and play. Please still include me and I will try my best, even if I need to stop and rest.
But don’t worry, you can’t catch Pompe, I’m not contagious - I was born this way. I visit the hospital frequently, so doctors can check and monitor me.
Sometimes looks can be deceiving, and we need some help with our breathing. Some days the muscles in my chest get tired, just like all the rest. So I use a machine called a vent, to breathe for me when my energy is spent. I use my machine to help a bit, when I have to sleep, lie down or sit.
I have a special medicine, given through my vein, it slows down my Pompe and helps to stop the pain. Some children have a port, where the medicine goes in, it’s like a little button underneath their skin.
Some of us need to use a wheelchair, or have leg braces that we have to wear. These help strengthen our knees to our toes, and are known as splints or foot ortho’s.
Others may need help to eat their food, so it’s given through a feeding tube.
To keep me in good health and safe and sound, sometimes I need equipment to help me get around.
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