Our entire little close knit community is grieving over the loss of this sweet little girl...
Lilly was the daughter of one of DD's former employers and she has touched us all. I do not remember the name of it but Lilly (and her brother who passed away about 7 years ago) were victims of a very rare disorder; they were 2 of the 4 known victims
in the world. After Lilly's brother passed away, and Lilly was showing signs of the same disease, her parents had genetic testing done. The findings were astonishing; either one of the parents could have had a healthy child with other people but together their "chemical makeup" resulted in this disorder. It took 9-12 months to discover this phenomenon because it is so rare. Their parents are amazing people; Lilly could not talk, walk, feed herself, etc. but they took her everywhere with them. She won the hearts of our entire community because the one thing she could do was smile.
She had to have surgery last week when her seizures became more frequent and out of control but she never woke up. Her organs begin to fail and after 3 days of no improvement her family decided to turn the machines off. In the words of her Grandmother, "Lilly is now free and oh she has so much to learn but she and Stuart are finally able to play, love and talk to one another". Amazing family and our hearts go out to them.