Saturday, March 17, 2012

4th Annual Vision Walk For The Foundation Fighting Blindness

Almost 2 years ago we found out that our two sweet children have a rare genetic disease, Bardet-Biedl Syndrome. To this day, I remember when I got the phone call from the geneticist, just after Savannah had her ERG to look at her eyes. I wasn't able to go with her and Court and, they hadn't even gotten back yet. Even though deep down I already knew that that 1% chance was false. I always knew. It was like a waterfall crashing down on me.

One of the most heartbreaking symptoms of BBS is being reminded that Savannah and Xander's sight is deteriorating. It always feels like a jab to my heart. Last week, Savannah said my bright green nail polish is blue and wouldn't believe me that is is really green. I kept trying to explain to her shades of colors, and that it really was green. I just couldn't let it go until she agreed with me. I didn't want her to see a color that it wasn't because colorblindness and night blindness are the first sings. Every time she has to turn on the light of each room she goes in, and how every night she has to sleep with her lamp and room light on. Every time Xander walks right into a wall or Corner, or trips and falls onto the floor because he tripped over a step right in front of him. Or how whenever I point to something Savannah can almost never find it. Every time my heart aches for them a little more.

It make me so sad because it makes me think of all of the things that they might never see again in their futures, how they might never see mine and Court's faces again, or their future families. It breaks my heart to think that they might not be able to see this beauitful world of theirs anymore. All of those little things are what I love to to watch light up their faces, like when Savannah sees a flower and gets so excited and she has to smell it, or when she sees a rain puddle she has to jump in it and make foot prints, And she loves yellow and blue! Xander tries to run outside every opportunity he gets!

The Foundation Fighting Blindness is having their 4th annual Utah Vision Walk on June 16th. It is such a great and important cause that is so close to our hearts. This will be Savannah and Xander's team, Two Little Reason's second year walking and supporting them and other people living with eye degenerative diseases.

This year, our team is going to be having a bake sale to help raise money for the foundation, to help fund research and clinical trials to get us closer in finding a cure for blindness. Because, we know that a cute is in sight! All proceeds will go to the Foundation. But, we need help from friends and family to volunteer for helping with baking, selling, and promoting this bake sale. We have also been looking for a good location. If you would like to help, please email me at or leave a comment with your email. I will be setting up a time soon to organize a first meeting. This is so, very important to us and Savannah and Xander. Also, if you would like to join our team and walk with us, and or donate, you can go Here, and just click on walk team, Two Little Reasons. There is no coast to join our team and walk with us. We would love for everyone to join us in supporting Savannah and Xander. Sometimes, it feels as though we can do nothing for them but, through foundations like this there is hope.

Savannah and Xander are our two reasons!

Thank you


  1. Nicole, I would love to help anyway I can. You already have my email, let me know when you have meetings and what I can do. I would love to come and walk with you but seeing as it's on a Monday I will have to see what I can do for work. Keep up the wonderful work with Savannah and Xander.

  2. Thank you so much Tiffany! It means so much to us! June 16th is actually on a Saturday. I'll email you this next week about the meeting! Thank you!