The story of Lily
I’m Lily and I’m 12. I have a rare condition called Branchiotorenal Syndrome. What does that mean? It means that I am deaf/ hard of hearing and have chronic kidney disease to put in more simply. I dance my way through life and it keeps me strong both mentally and physically. I know it’s no fun getting poked and pricked to have my blood drawn every 6 months but it’s just so my amazing Nephrologist, Dr. Butani, can make sure I’m doing okay. I do have to take a vitamin D supplement because my 1 kidney that I have just isn’t doing that so great for me but that supplement is helping. I wear bright pink and blue hearing aids to match my personality and my Audiologist, Dr. Bracchi, is always super helpful and always up for the challenge in setting them up even with my type of bone structure and hearing loss is very unique. I make the most of my rare condition and want to inspire others, especially the younger generations, that we are all still able to do whatever we want to. I have got to train with my amazing mentor, Ruby, who is an award winning choreographer but takes time to work with me to help me reach my goals and dreams. I train with my dance crew in Los Angeles called Cubcakes directed my another mentor of mine, Thalia. I have got to be in a music video, and model for Athleta Girl and Justice. I’m just a girl living life to the fullest with the most amazing people in my life to help me on my journey of wanting to inspire others that they can do the same. Having a rare condition (1 in 40,000) doesn’t have to stop you from achieving your dreams it can be the reason you push yourself harder to reach them.