Meet Rose, a silly and curious 7-year-old, who loves to dance, giggle, and explore the world around her with her best pal, her stuffed Dino named “T-Rex.”
Her favorite pastime is playing in water: water tables, cups of water, splash pads, pools, etc.
Rose was diagnosed with an ultra-rare genetic syndrome called Bainbridge-Ropers Syndrome, which includes feeding difficulties, delays with language, developmental delays, and muscle weakness.
Rose learned to walk this year! Her record is 20 independent steps so far; and she uses a wheelchair for longer distances.
Rose has had two surgeries (for tethered cord and G-tube placement) and will likely need another big surgery to correct her scoliosis (a curvature in her spine).
Rose has a hard time swallowing, so she uses a G-tube. She still loves to taste ice cream and other treats, but most of her food goes through a special tube right into her belly.
Rose sometimes gets sick to her stomach and throws up frequently. She used to go to the hospital a lot—twelve times in three years, but now her parents know how to help her feel better at home so she can stay healthy and comfortable.
