What is a Hero?

What action does one take to become a Hero? Who are these Heroes that you hear everyone talk about?

The term Hero is used too loosely and too quickly these days. To me, a Hero is not a football player who scores the game-winning touchdown or the goaltender who saves his team from a loss. A Hero is usually an ordinary person who did, or does extraordinary things. A true Hero is really never a Hero at all; at least not in their own minds.

My Introduction to CHD

I will never forget the day when I was introduced to the devastating facts of CHD and to the struggle that CHD families have to face every single day. It actually happened through my children’s book, ANGELina – Don’t Be Afraid of the Dark, for which I was seeking a donation project. A friend of mine referred me to Michelle Duyck, a mother who lost her infant daughter Chloe to “HLHS”. Michelle started an organization called “The Chloe Duyck Memorial Fund”, in order to fund research in the area of pediatric congenital heart defects.

Over the last year, CHD awareness has become a very important matter to me, because the sad fact is that hardly anybody knows about these defects. I have made it my personal mission to educate the public, especially parents and parents-to-be about CHD. Why is there not enough education about it? Why is there no mandatory testing to detect these defects early? I don’t have the answers, but it puzzles me every single day. I decided to put together this collection of stories as homage to all CHD Heroes and their families. As I read through each story, each fight for life simply amazed me. Reading and feeling the great sense of love in each family touched my soul. There were many days when I sat and cried with the amazing people who wanted to share their stories with me, in order to make a difference and in order to be heard.

About the Stories in This Book

Most of the submitters are not professional writers. This is what makes this book even more authentic and unique – real life experiences expressed in their own words. Some families had already written their stories, but most of them started after I approached them with the concept of this book. So I did experience firsthand how emotional and painful their writing experience was. Some told me that they thought they couldn’t do it; it simply would be too heartbreaking. Some wanted to stop right in the middle because it just was too painful. I am proud to say that all of them pulled through and made it. Made it, so that people around the world will have the chance to learn about CHD and to give comfort and strength to other CHD families.

These stories are tremendous testimonies. Testimonies of outstanding families, whose every day struggle with CHD was and continues to be filled with immense fears, but also with great hope and faith, testimonies of victory but sadly also about loss. But most importantly, testimonies of the greatest love of all. I hope that in a small way, writing their stories was also allowing them a time and place of healing.

I believe that just the right people will find this book and draw strength and inspiration from these stories. I know that their hearts will fly to these families; just like my own heart flew to them.

My Hope for This Book

How much bigger can this impact on CHD awareness get? Not much, if you ask me. CHD is not just about survivors, it is also about many losses and we need to realize that we have to do something. We need to envision a better future for our children and then act on this vision!

Dietrich Bonhoeffer once said that the test of the morality of a society is what is does for its children. These wise words I repeat to myself every day. It is time to step up to the plate for the ones who do not yet have a voice, in order for them to become a voice for us in the future. We need to make changes for our babies. We NEED mandatory, in-depth heart scans in order to detect CHDs early. Let’s continue to work on this goal because together we can achieve so very much.

Everybody who has to live through the experience of having a CHD, is a real Hero to me. It takes a lot of strength and courage to fight CHD, and you will see that they all have fought and continue to fight the bravest and toughest battle. What amazing inspirations and great teachers they are to me. True Heroes ...

To the readers of this book:
May these stories of our Heroes touch your heart and soul, the way they have done and continue to touch my heart and soul every single day.

To all the CHD Heroes who are still with us and to those who have passed on:
This book is dedicated to you.

I love you,

As a child psychologist, Sandra Kay has met children all over the world while actively working on environmental and health related issues for the last 15 years of her life. While creating her first children's book ANGELina-Don't be afraid of the Dark, she was introduced to the devastating statistics of Congenital Heart Defects and the urgent need for more public awareness of them. She decided to join the CHD community and created her organization, Matters of the Heart, home for many CHD projects like creating giftbags for little CHD patients in hospitals or the CHD Awareness Brochure for the US, UK, Australia and Canada ( more countries coming soon ). If you would like to find out more about how you can help in spreading CHD awareness, please visit her webpage: www.mattersoftheheart-online.com