This week is Chromosome Disorder awareness week and I wanted to share a bit about our little ( actually giant 4 year old 😬) Dex.
He was born missing my copy of his 14th Chromosome & received two copies from dad , which is called "Uniparental Disomy 14/parental " or some call it "Wang Syndrome." It's very rare and Dex is one of only a handful of babies diagnosed. It can cause things like polyhydramnios during pregnancy ( my stomach was extremely large) and early labor . Babies are usually born with respiratory issues and need immediate intubation, abnormal rib cages and most can't swallow which can cause silent aspiration. Many babies are also tube fed for quite a while ( Dex was tube fed for his first year and a half of life). There's so much more to their little stories and we decided to share Declan's journey over at dexandbodieblog.com . There, you can learn a little more about his birth story and our every day happenings. .
These kiddos ( and adults ) are so amazing. Let's spread positive awareness and show them so much love! #shinebrighttogether