Brynne, age 9
Brynne is 9 years old and is spunky and full of life! She loves nothing more than to sing, dance and cheer for people wherever she might be. People gravitate towards her vivacious personality and energy. Brynne reached all of her baby milestones as expected, but as she started pre-school she had a hard time retaining information. She could communicate if she needed something or there was a problem, she recognized most all letters and some of her numbers up to 10, and by kindergarten could write her first name. As she now comes to a close of her 2nd grade year, she can hardly communicate, gets frustrated when asked to write her name or work on letter or number recognition, she is also losing independent skills and is getting lost more often.
After years of searching for answers, Brynne was diagnosed with NPC at the same time as her little sister Kendall in April 2017. She receives VTS-270 every other week at Loma Linda University Hospital. Her family is extremely loving and grateful, and are all hoping for a cure for NPC.