"She is fearless and wild, stubborn yet silly, determined and smart, and we are in awe of her braveness. We are on this incredible journey together. Dream big little girl! Usher Syndrome has no chance of standing in your way!"
Its so important for anyone with usher syndrome to register so that they are in contact with the researchers who are working to cure this awful disease. If you or someone you know has Usher syndrome please register at the usher syndrome registry.