Special Needs: The Journey Of A POMPE child (Special Needs, work and care of a child with Pompe, Managing Pompe), by Jenny dos Reis
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Special Needs: The Journey Of A POMPE child (Special Needs, work and care of a child with Pompe, Managing Pompe), by Jenny dos Reis
Best PDF Ebook Special Needs: The Journey Of A POMPE child (Special Needs, work and care of a child with Pompe, Managing Pompe), by Jenny dos Reis
This book will take you through the Journey of understanding, managing and living with Pompe. When I met Mary Jay, I must say I felt that there was everything wrong about her. She was only four and a half years, with her glasses at the end of her nose and her head back a lot. She didn’t have much control on her legs or hands which made it very difficult for her to climb up the stairs. She was at the reception class and the school employed a special person from a specific agency to stay with her. Sadly, no one else wanted to work with her, presumably more because of the fear of the unknown rather than spite. Actually, it was scary as she had tubes all over her. This, as I got to learn, was to help in the feeding and breathing too. I thought she was a very sick child but I did not understand what she suffering from then. My assumption is the larger population was as much in the dark as I was. It gives me a feeling of fulfillment having to shed more light on what Mary Jay is suffering from and how better she is doing at the moment because of the support she received. This is going to be a comprehensive journey through the disease known as Pompe. By the end of it, you will not only understand more about the disease and how it comes about but also the management and how best we can improve the life of those that live with the disease. I will take Mary Jay through this journey with us so that you can associate more on the specific things that I will be trying to discuss. I believe that it will be one of the most educative and informative journeys that you will have taken in a long time.
Here is a preview Of What you will Learn
- What Is Pompe?
- How Does One Get the Disease
- Signs and Symptons of the Disease
- Health Problems in People Living with Pompe Diagnosis
- Managing Pompe
- And Much, Much more This book will help you to understand and living with Pompe. Take action now, get this book for only $0,99.
- Amazon Sales Rank: #1483759 in eBooks
- Published on: 2015-10-12
- Released on: 2015-10-12
- Format: Kindle eBook
Where to Download Special Needs: The Journey Of A POMPE child (Special Needs, work and care of a child with Pompe, Managing Pompe), by Jenny dos Reis
Most helpful customer reviews
2 of 2 people found the following review helpful. it's an honest and interesting portrait By Amazon Customer When I was approach to read this book, I didn't know anything about Pompe. Eventually I said I have a look, I got easily engage to learn about. It's incredible very well explain and go straight to the point without spending too much time on details that you just skip pages, but you read every words and go back to them again. Jenny dos Reis was right when she said that a large population still in the dark about this disease as I was.I got a bit moved as a father to read about the journey of Mary Jay and think how difficult it was for the family and the people around her. It's an honest and interesting explanation how she went through and still fighting with this so rare progressive disorder. We should be more aware of this, and help other to create awareness.Everyone should read this book and be more aware and helpful, Thanks to the author.
1 of 1 people found the following review helpful. This book deserves a wide audience. By Nancy P. In this book, Jenny dos Reis explains a comprehensive and thoughtful analysis of the serious, lifelong difficulties facing families of children with severe disabilities particularly Pompe, with emphasis on interaction and support within their communities. This book is fully illustrated and written in a way that all the readers can understand. Moreover, I really like how the book is presented in an overall tone which is encouraging and supportive which is very significant for parents who are concerned about their children.I recommend this book to anyone seeking to understand special needs families. It will definitely provide a wealth of information and will be a wonderful resource for children, particularly children with Pompe, their parents, teachers, carers and siblings.
1 of 1 people found the following review helpful. easy to understand style By DespondantDespot This is a very specialized book, and invaluable if you want to learn more about what children who live with Pompe disease go through. It's very detailed and exhaustive, and well-written with a simple, direct, easy to understand style. My favorite part was the section about managing the disease, which contained a ton of helpful advice.
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