Rare Genetic Disorder Today's Micro Preemie Monday story is a little different. Not only did this sweet preemie have to fight to survive an early birth, and all the complications that come with that, but it is now known that he is also fighting a rare genetic disorder. His mother, Jenevieve, reached out to me in order to share her son Matthew's story. It is such a rare … [Read more...]
A Rare syndrome, Nova’s follow-up story
Rare Syndrome When you hear statistics like 1 in 3000, or words like "extremely rare," you think it will never happen to you or your family. However, when you've gone through something like premature birth or a NICU stay, you find out that "rare" isn't always as rare as you think. Before I had my twins at 25 weeks, I had never met another premature baby or even known what … [Read more...]