Georgie

My Daughter Georgie was born in 2009 (8yrz) with all that comes with oral facial digital syndrome type 1 few examples cleft palate split tongue tongue the 4 polyps on tongue dimples in her cheeks...it took 2years to get diagnosis as Georgies bloods had to go to a specialist lab in France where finally she was Diagnosied with type 1 oral facial digital syndrome, georgie has had 2 full palette repairs bronchaial flap, numerous teeth removed georgie has too many teeth on top an not enough of bottom an very mis shaped fibrosis gums an also very dry damaged hair with alopecia georgie has also been diagnosed with photo sensentive skin so basically allergic to Sun an numerous amounts of other things Georgies is globally delayed an has just started a special needs school. We still have a lot of issues with hospitals etc as there is not a lot of knowledge regarding oral facial digital syndrome which is a shame as if there was then may be georgie would get more help with her condition...but georgie I very lovable happy girl with an infectious smile