"Pompe and Me" is written by members of the Pompe Community.
It is an informational children's book about Pompe Disease.
From the 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.
It is available as a Kindle Edition on Amazon