10/02/2024
ONE YEAR AGO TODAY
One year ago we got a call that changed our lives forever. Our organization called that they had found a child match for our family, but wanted us to really take time to pray and consider before making a decision to even move forward to view her full file, because of her medical complexities and unknowns. They sent us her medical information, without photos, to allow us to research and pray through this sweet girl’s diagnosis. Cleft hands, cleft feet, cleft lip, cleft palate, malformation of TP63 gene which could indicate:
• Ankyloblepharon-ectodermal defects-cleft lip/palate (AEC) syndrome (which includes Rapp-Hodgkin syndrome)
• Acro-dermo-ungual-lacrimal-tooth (ADULT) syndrome
• Ectrodactyly, ectodermal dysplasia, cleft lip/palate syndrome 3 (EEC3)
• Limb-mammary syndrome
• Split-hand/foot malformation type 4 (SHFM4)
• Isolated cleft lip/cleft palate (orofacial cleft 8.)
This was Greek to us, but all we knew is that we continued to feel drawn to this sweet child that we hadn’t seen. Not knowing the severity of her condition, when we told our org that we wanted to move forward, we were preparing ourselves for the worst while pulling up her photos. Boy were we wrong. This little 8 pound 9 month old girl, “Vinotha”, stole our hearts immediately.
YESTERDAY she took her first real fully independent steps, something we weren’t even sure that she would be able to do without surgeries (see video). Our beautiful Vinia Hope Barbee is 21 months old and thriving so much more than we can could even begin to comprehend a year ago.
We’re still so blown away from all of the generousity, prayers, and most importantly the Lord’s grace and provision that have allowed us to love this girl today. ❤