Hi! I’m Emma. On September 10, 2014, at the age of 16, I was diagnosed with Retinitis Pigmentosa, commonly known as RP. RP is genetic degenerative disease that causes complete blindness, as peripheral vision closes gradually into a tunnel until all vision is gone. Currently I am completely night blind, I have 9 degrees of peripheral vision, and my central vision is pretty terrible.
I’m excited to share my story and the adventures I’ve had in the past four years, and hopefully for many years to come. Don’t feel sorry for me — this is my life, and I love it. Truly! I have had struggles, pain, and experiences that I would not trade for eyesight, as I have acquired vision in countless other ways.
I currently live in Boise so I can learn skills that will help me live fully blind. I love the ATC and all I’m learning there. I also love to keep my hands busy, so in my free time I read, lap swim, write, embroider, play the cello, and hang out with my crazy family! When I’m not busy with school, I teach swim lessons and bake to my heart’s content.
Hi! I’m Valena, Emma’s mom. We’re building this website together to share her story and journey, and to share what I’ve learned as Emma goes blind.
Emma is truly remarkable! She has a beautiful attitude and outlook that makes this journey so much easier on those around her, and I’m grateful to be along for the ride. Over the years we have both learned some amazing things, and while I’d never wish RP on anyone, it has been a privilege to learn alongside her.
This journey has opened my eyes to the incredible things blind people are capable of — way more than we sighted people give them credit for! I’ve also come to understand that my role as supporter and cheerleader is vital as Emma becomes an independent and highly successful young lady.
We’ve learned a lot in the last four years, and we hope to share some of what we’ve learned with you.