There's an amazing online support group called MOM: Moms of Miracles for families of kids with all kinds special needs. It's humongous and has recently been named the largest online support group of its kind!
The administrators have started a blog called mi-RARE-cles. It's a blog where families of kids with rare diseases, syndromes, and disorders can submit their stories and share them. I jumped at the cance to submit my story, in hopes that I might find someone else whose child has the same syndrome. My story was selected to be published, and here it is!