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Chicagoland VisionWalk FY17

A true visionary!!!!
A true visionary!!!!

Team Focus

Hello Friends and Family!
It's time to start building our Team Focus and gaining donations for the 2015 VisionWalk! We are once again co-chairing the walk this year (Little Nate is a co-youth chair).  We are committed to helping find a cure for not just our son Nathan, but for everyone suffering from Retinitis Pigmentosa and other blinding retinal diseases.  This year's VisionWalk will take place at Busse Woods again in Elk Grove Village on June 7, 2015. We are hopeful and positive that each dollar we raise gets us one step closer to a cure.  We were overwhelmed over the last two years by everyone's generosity and we would be so thankful to everyone for being able to participate once again.  Whether you just donate, or come out and walk with us as well, we appreciate your kindness.


This year we are asking our team members to sign up early and create their own walk pages.  In doing this, we can reach even more people as our family and friends can reach out to their contacts as well.  Think of how much money we can raise for the Foundation Fighting Blindness if everyone just asked a few people for a donation?  The thought of it is exciting!!!!  The vital research needed to cure these diseases is funded through these donations, and so therefore I'm going to work my hardest in hopes of a cure in the near future for Nathan and others suffering from degerative retinal diseases.

At this point, we are still going by last year's eye test results until our next doctor visit on March 31, 2015 at the Univeristy of Iowa with Dr. Ed Stone.  Nathan's peripheral vision is gone and he has about 10-15 degrees of central vision left.  He is still completely nightblind, but during the daylight Nathan navigates around (with some bumps and bruises daily) to the best of his ability without any assistance.  Once it starts to get darker out, then Nathan relies on one of us to lead him, along with a flashlight in hand.   Nathan works closely with his vision itinerant and mobility specialist to work on necessary everyday skills to help him gain some independence.  Believe it or not, Nathan will be attending high school in the fall! He will be reunited with one of his favorite vision itinerants there (the one who taught him Braille in 2 weeks) and is going to have a tough schedule! On top of honors classes, he will also be taking AP European History as a freshman and still being pulled out for his vision and mobility services.  

We are still working hard with the genetic doctors and labs to find which gene is mutated on Nathan. They are getting close I believe!   We will keep you posted for sure on any developments, and we will be sure to share with you in early April how Nathan's vision is. Keep your fingers crossed that it has hit a plateau for awhile here! 


Please contact me with any questions that you have regarding the walk, setting up your own page, or anything else at all.  Like I said before, we appreciate any help that you can give us, and we thank you for being a part of our team with us.  Nathan continues to be a trooper and an inspiration to us.  His positive attitude is infectious! Thank you for all your prayers and support!!!

 

XO

Amy Hayes (and Nate, Nathan, Teagan and Kacy)

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