Carmine's had many challenges since his birth. We've seen countless specialists and therapists. It's been a very hard and exhausting four years fighting to get answers for our boy. In December, I took it upon my self to seek genetic testing. The counselor agreed Carmine should be tested to see if there was something causing all of his issues.
February 18, 2025 we received the results and an answer to it all. Carmine has Malan Syndrome. Malan Syndrome is an ultra rare genetic over growth syndrome. There are only 350 people with Malan Syndrome worldwide!
While this is incredibly overwhelming, it doesn’t change the pure love and joy he brings to our lives and everyone else's every single day. We are learning to navigate this new journey with him, and while it won’t always be an easy one, we will never to stop fighting for him and supporting Carmine in everything he does.
Now we know for certain, our sweet Carmine is quite literally 1 in a 1,000,000! 🌻🧬💛
