ARI’S STORY

I just turned two and I’m totally addicted to sports. For my birthday, I got a football shirt, basketball shirt, baseball shirt, a tennis shirt, and more sports paraphernalia. And had to try on everything right there because I was so excited! I’m told I have very advanced ball skills, too. I’m talking up a storm, running around like a crazy man, and can’t wait for summer on the lake at my house. I have a few hurdles to jump along the way, but without the Melody®, my chances wouldn’t have been very good.

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

I was diagnosed at my 18 week ultrasound with a critical aortic stenosis and evolving hypo-plastic left heart. This means I’d have half a heart (like a lot of my friends) if it went unchecked. Fortunately I was able to have two heart surgeries before I was born to allow my heart to grow. Unfortunately, all the pressure on my heart before I was born messed with my valves, and I’ve now had 3 of my 4 heart valves moved or replaced in two open heart surgeries at 12 and 20 weeks old. At 20 weeks I needed a mitral valve. I was looking pretty bad and had to make an emergency detour into cardiac ICU while I was recovering (nicely, I might add) from my first surgery. I got the Melody® in the mitral position. Since then I’ve had one balloon catheter to dilate the valve. It worked great.

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

I’ve had 2 open heart surgeries so far, and have one coming up. If It wasn’t for the Melody®, I’d probably be on number 4 or number 5 already, looking at number 6. Because of the Melody®, it’s quite possible I can grow to adulthood, and then keep on going. Without the Melody®, parts of my heart would never be able to grow, and my chances would be much slimmer. I have complex cardiac issues, but things are looking pretty good. Without the Melody®, I wouldn’t have much of a chance.

What would you like to tell everyone?

You might think I’m not that lucky, but I am. I was fortunate to be in Boston where they happened to be innovating in just the areas where I needed help. There are kids all around the country and the world that need the kind of help I was able to receive. Approve the Melody® valve for use in the mitral position, and so many more kids will get the same chance I got.

A few words from Ari’s parents

Ari is a joy. We can’t wait to wake up every morning to, “Hi Mommy. Hi Daddy. Basketball time? Shoot hoops?” He really is obsessed. He amazes us every day. Without the Melody® valve, we wouldn’t have any hope and we know it. But every day now we wake up knowing Ari has a chance. 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.

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