I just turned two and I love life. I have a personality that cannot be surpassed. Everyone who meets me falls in love with my smile and contagious laugh. My Mommy and Daddy are my favorite snuggle buddies and I love playing with my older siblings and my doggie, “Woo Woo”. I am just learning to walk comfortably and I talk like crazy. I have more words than the average two year old because there is nothing average about me. Music is in my blood and I dance anytime I hear a musical beat. I play the drums, sing and dance like there’s no tomorrow, because for me there wasn’t supposed to be. I still have a ways to go but without the Melody®, I wouldn’t be alive today.
What’s your medical story (the short version)? How does the Melody® fit in?
I was diagnosed at 4 months old with Shone’s Syndrome. The whole left side of my heart was abnormal. My mitral valve was not working at all and was causing more damage than good. The surgeon told my Mommy that my chances of survival were minimal. My first open-heart surgery was when I was 4 1/2 months old. The surgeon tried to repair my original mitral valve in hopes that I could keep it. However, shortly after surgery we knew the repair didn’t work. I was very little and didn’t grow easily because my body was working overtime to compensate for my poor heart functions. I was 7 months old when I had my second open-heart surgery. I only had a 20% chance of making it through surgery and using an experimental valve, the Melody®, was my only option. Luckily for my family and I it was a successful placement. I was the 6th child to ever receive the Melody® valve in the mitral position. I have had 2 balloon catheters to dilate the valve since my procedure and so far, they have worked great.
How do you think your life is different because of the Melody® valve?
I am alive today because of the Melody® valve. I have some other health problems that put me at serious risk for any of the other options available to help my heart. So, the Melody® was basically my only viable option. Had I tried other options there were too many chances that I wouldn’t have survived continuous surgeries or some of the medications I would have needed. My body has had a very hard time bouncing back from the two surgeries I’ve had and there was very little likelihood that I would have made it through more. Without the Melody® I probably wouldn’t be who I am today.
What would you like to tell everyone?
Some might say that I’ve had a hard life. I look at my life as a teaching experience. Many advances in medicine happen every day and being part of this experimental procedure was a privilege. There are so many other children around the world that were not given the same opportunities and they are not thriving like I am. I hope to see the Melody® valve approved for use in the mitral position so more children can have the same chance I was given.
A few words from Alexander’s parents
Alexander is the center of our lives. He is an absolute love and every day we are better people because of the love and laughter from our little boy. He has come so far in such a short period of time and we can’t imagine our lives without him. Without the Melody® valve we wouldn’t have had the chances and the hope we’ve had with our sweet boy. Everyone says that he’s lucky to have parents like us, but honestly, we are the lucky ones. Alexander has taught us how precious time is, how not to take anything for granted, and how no matter what you’re going through you should face it head on with a smile because things could always be worse. Alexander has touched so many lives with his amazing spirit and love of life. Everyone who meets him finds joy in his smile and love in his heart. Please support the effort to implore the FDA to approve the Melody® valve. With the FDA, Medtronic, and the doctors at Boston Children’s Hospital, we can give more kids and families real hope for full and happy lives.