ZUZU’S STORY

I just turned one. Most people didn’t think I would make it but I knew better. Most people are surprised at what I have overcome. But it is just what I do because I am awesome! I make so many people happy. Everyone is always smiling at me, even strangers in the street. Like I said, I am pretty awesome! I love people. I love to watch them and study their faces and expressions. I am not a big fan of applesauce but I sure do love squash and sweet potatoes. Without the Melody® valve I probably would not be here today! And I definitely wouldn’t feel as good as I do now.

What’s your medical story (the short version)? How does the Melody® fit in?

My medical story started in France when I was six months in utero. In very broken English the doctor told my Mom and Dad that I had an extra twenty-first chromosome otherwise known as Down Syndrome. So my family packed up,  left their lives in France and moved back to the States searching for the best health care for my situation. We spent tons of hours in the hospital doing tests. I was born premature and spent over two months in the NICU. When I was four days old they found three very big holes in my heart but didn’t want to fix them until I was big and strong. When I was twenty weeks old I had my first open heart surgery. The surgery didn’t go as planned and my mitral valve was damaged. I was scared because the doctor didn’t think he could fix it. The options of replacement for my damaged valve were not good. I was not breathing well and my heart was working so hard it tripled in size, nearly taking up my whole chest! The doctors where I live told me I didn’t have many options. In the nick of time my Mom and Dad learned about a brand new procedure doctors were doing in Boston hundreds of miles away called the Melody® Valve. I almost didn’t make it to Boston in time. But I was brave and strong. I had my second open heart surgery at thirty-four weeks old and i now have a Melody® valve in the mitral position. Because of it the quality of my life  is so much better. I am growing, learning, playing, laughing and loving every minute of life.

How do you think your life is different because of the Melody® valve?

If it wasnt for the Melody® I would likely have to have twice as many surgeries I will now by the time I am three. Now I have the time and strength to learn how to sit up and crawl. I finally have the energy to play with my sister and parents.  The best part is that I only have to take half of a baby asprin to keep my blood from clotting instead of a shot every single day which is what I would have had to do. If it wasn’t for the Melody® I would either be in heaven or spending most my days in a hospital bed or in doctors’ offices.

What would you like to tell everyone?

Because of the Melody® valve in my mitral position I have a future. Because the doctors in Boston were brave enough to do something different and try something new I will have the opportunity to live, to love and to help pave a path to get the Melody® approved by the FDA for the mitral position.  The Melody® mitral will change the lives of other kids and babies just like me, I know it will!  The Melody® in the mitral position is the greatest blessing I have received..

A few words from Zuzu’s parents

Zuzu has been through more than a little baby should have to go through and she is in no way out of the woods. When we thought there was no hope, Boston Children’s Hospital and the innovative doctors there showed us that there was. We know there are other families who feel like they have no options who may be losing hope, searching for a miracle.  That miracle could very well be the Melody® valve for the mitral position. It was for us.  Please help us approve the Melody® valve in the mitral position so others can experience the joy a child can bring and they can feel hope in a what can seem like a hopeless situation.

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