Our Two Reasons (Vision Walk Video / Bardet-Biedl Syndrome)

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 nicolelove_123@hotmail.com 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

Team Two Little Reasons VisionWalk 2011

It was a perfect day for the VisionWalk!This is amazing team! Thank you for coming out to support Savannah and Xander! Unfortunately, Some of our team weren't able to make it. We missed all of you! Maybe, next year!Our team Two Little Reasons T shirts were blue because that is Savannah's favorite color right now!They have Savannah and Xander's hand prints on the front. Xander's little hand print is with his sixth finger. I love how they turned out! Thank you Erin, Rob, Becky, and Rob's very kind friend who made the shirts for us. Thank you so much all of you!
We finally got Savannah to exchange pink shoes for her rain boots!
Savannah loves her cousins!
My Sister-in-law and mother-in-law came to support us! They are awesome!
Savannah and the kids enjoyed playing in the bounce house!
Poor Savannah always had a long line of kids behind her and kids trying to get past her, but she was having too much fun to notice!
Savannah's sticks and leaves!

One of the many times she decided to go take a nature hike by herself. LOL



Thank you everyone, for all of your love and support! It truly does mean so much to us. It feels good to do something for such a great cause! I know that everyone has struggles in their life's. This is very dear to us and I just feel that I need to do all that I can and, we need to fight for Savannah and Xander and others like them. We need to fight for our children with all different kinds of special needs. They need us to fight for them. We are the ones who can give them a better future! We can't wait to do this again next year! Thank you again!!!


Savannah saw the ducks and ran off just after the walk started. I stayed with her because she wasn't going back.We ended up feeding dirt to the water and walking around the pond for the first half of the walk.
Yes, I let Savannah have some cotton candy, and a blue snow cone. I am guilty!
But, How can you say no to that? I did eat most of her cotton candy though!

It was so nice to be there surrounded by close friends and family!

This is what Savannah did to her glasses in the car because she was board. I almost cried!



I am so thankful that organizations like the Foundation for Fighting Blindness exist. They give us hope for the future for our precious children like Savannah and Xander. They give us hope and an abundance of amazing people that you never would have met. They bring your family and friends closer. It is so incredible to think how blessed Savannah and Xander are by all of the love and support by so many people all around them and to know that no matter how bumpy or dark their road ahead will be, we are all here to guide them.
We love you Savannah and Xander, ALWAYS!

Costa Vida VisionWalk Benifit Day, Thank You!

The vision walk is only 4 weeks away! I am so excited! I want to thank everyone for coming to the Vision Walk Fundraising event at Costa Vida, and especially thank Costa Vida for sponsoring it! The benefit day at Costa Vida went wonderfully! They said, they had like 48 flyers turned in! Costa Vida donated 20% of FFB! We earned $218.00 for teams Blue Elephants and Two Little Reasons for the Foundation Fighting Blindness! Thank you everyone! We couldn't have done it without you! I also want to thank my sweet friend Amy, who also has two beautiful children with BBS for putting all of it together. You are amazing!
My hope is to get more people to be aware of these horrible degenerative eye diseases. Retinitis pigmentosa (RP)affects around 100,000 people in the U.S. RP is mainly caused by mutated genes inherited from one or both parents. Mutated genes give the wrong instructions to photoreceptor cells, telling them to make an incorrect protein, or too little or too much protein.
Thank you, thank you again! It means so much to our family for everyone's support!

VisionWalk2010

Just to warn you, Don't watch this unless you are prepared to cry.I found this video on you tube. As I watched it it all became more real to me. I am so glad that we are doing VisionWalk. We can finaly do something for Savannah and Xander! It feels so good to be able to do something. And, just like this little boy I know that they are strong and they will fight and we will all be there right with them supporting them with our love. As long as we're there for them there there will always be hope!

Team, Two Little Reasons Vision Walk Team T Shirts

We are ordering our team Two Little Reasons, Vision Walk Team T shirts. They will be light blue. They are light blue, with Savannah and Xander's hand prints( Xander's 6 fingers), and says Two Little Reasons. My wonderful sister-in-law and friend Becky came up with it! It is so cute!If you are interested in a shirt and want to actually see the logo send my your e mail and I'll email it to you. They are $12.00 per shirt. We want to order them soon in one big order so, we need all orders as soon as possible! We need to know your sizes and how many shirts you want. My email is nicolelove_123@hotmail.com. Don't forget the Costa Vida Benefit day for Vision walk is this Saturday from noon to 8 P.M.! It is at the American fork location only and you have to bring your flyer! I am so excited! Thank you everyone for all of your support!

Costa Vida is Sponsoring a Benefit Day for VisionWalk

I am so excited to announce that Costa Vida is sponsoring a benefit day for VISION WALK!

Costa Vida, at the American Fork location only will donate 15% of purchases made with this flyer on May 7th, 12 to 8 p.m. to VisionWalk. If 100 people show up, Costa Vida will give back 20%! Just print and present.

It's a great excuse for a date night! If you would like an actual copy send me your email and I'll forward the flyer to you. You can print this picture and take it too. We would love for everyone to come! This mean so much to our family. Thank you for all of your support! See you there!

Foundation Fighting Blindness

Foundation Fighting Blindness

Please, watch this video. Gene therapy is in clinical trials. Just think of how it can help so many special little children s lives. I cry every time I see this video. It makes this more, a reality. It is amazing what they can do.