Embracing the Journey

heart guide

If you have found your way to this page it is likely that you have just received news that your baby has or might have a life limiting genetic disorder such as Trisomy 13 or Trisomy 18. We understand that you’d rather be anywhere else doing anything else. While we can’t take your pain away or tell you that everything is going to be the way that you had dreamed, we can tell you that one day you look back and cherish every moment.

We are a group of families who have walked in your shoes, some of us prenatally, some discovering the diagnosis soon after birth. We were told that our babies would die. That we needed to be prepared to say goodbye. That there was no hope. In fact, many have been told, while holding their newborn, that their are no other living Trisomy 18/13 children.

The sad truth is, many children with Trisomy 18/ 13 and related disorders will not survive to term. Its also true that of those that survive to birth, many will live only a few minutes, or hours, or perhaps even days or weeks. What is also true is that about 10% WILL live to celebrate their first birthday and even many more beyond that.

However, what is not true is that there are no survivors. What is not true is that there IS NO HOPE!

Each journey is different. Each child is unique. No one knows what’s going to happen. We know its scary, likely the hardest journey you will ever make. Your journey will be revealed to you along the way. You’ve been swept up into a life you didn’t expect and may feel like you’ve lost all control.

It doesn’t have to be that way. This is YOUR baby and ultimately the decisions and choices are up to you. While the path is yet unknown, we encourage you to “Embrace the Journey”, cherish every moment you have with your child.

“Enlighten your Heart” and you’ll know that, while not something you would have chosen for your life, this can be the most blessed experience you’ll ever have.

“Empower Miracles”, through your commitment to your child, the knowledge you will gain and the guidance of your heart you will know what to do, when to do it and you will find in this journey, miracles beyond belief.

Listen to your heart and you’ll do just fine.

Where there is Life, there is Hope!

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