We are the Courson’s!We live in Georgia. Our daughter Paisley was born with Thanatophoric Dysplasia (aka TD) and this is our story. Paisley has Thanatophoric Dysplasia a rare form of skeletal dysplasia. Thanatophoric Dysplasia is a severe skeletal disorder characterized by a disproportionately small ribcage, extremely short limbs and folds of extra skin on the arms and legs. The term thanatophoric is Greek for "death bearing". Children with this condition are usually stillborn or die shortly after birth from respiratory failure, however a small number of individuals have survived into childhood and a very few beyond. Paisley was born on August 28,2019( 6 weeks early) weighed 5lbs 2oz (they said she would weigh around 3 but they were shocked instead) Paisley has had tracheotomy surgery. That is where they cut a little hole in neck at the air way and place a trach for breathing. Paisley has also had cranial decompression surgery. That is where they drill away some of the bone around her spine and skull to relieve the pressure and allows blood flow. She spent the first 6 months of her life in the children’s hospital and finally came home in February. We are so grateful and blessed to have her home and see her thrive so much. This road may be difficult but it’s so worth it and we want to bring awareness to her condition and bring awareness to self care as parents. If you would like to donate for Paisley’s continued care and medical needs along with bills that come along with her condition we would grateful appreciate it. Thanks for supporting us.