Donnai-Barrow Syndrome

I know this is not a medical blog but just wondering if any one out there has had experience with Donnai-Barrow Syndrome.
It's a very rare genetic syndrome. Only one person in 200,000 in the US is estimated to have it. My daughter might have it
and there is not much info out there. With only five people in million with this syndrome. Not too many people knocking on congress' door to fund research.
Right now it's a toss up between Donnai-Barrow Syndrome and possibly Rett's Syndrome. Either way Kelly is a happy beautiful little girl who loves to climb on chairs and tables just to keep me on my toes.

Oh and her twin sister who has no medical issues just went poo poo on the potty today......YEAH for all those moms going crazy out there eventually it will happen... Of course she made a mess in her night night diaper. Every day is an adventure. : )