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The Facebook post I have waited over two years to read…

Yesterday I read a post on Facebook from a friend that I have only personally known for a couple of years but have “Facebook-known” longer.  I feel like I have known her forever and felt like it would be forever until I would get to read the long-awaited post.  My friend Beth was finally able to tell the world that her son had received gene therapy to restore a massive amount of his vision. Her son, Christian, has been involved with the pioneering science happening right in my hometown of Philadelphia – and the success has blown doors, windows, and roofs wide open in the curing blindness world.  The first few lines of my friend’s post:

OH MY LORD!!!! My son’s miracle story just in & FINALLY shared by none other than NATIONAL GEOGRAPHIC!!!!
We’ve waited 3 long years to be able to share his miracle publicly & it’s finally happening! Unmeasurable thanks to first & foremost our daddy God who always promised that Christian would be ok and showed us all a modern day miracle that we will now share for Your glory!

Here is a link to the story that National Geographic broke yesterday titled “Why There’s New Hope About Ending Blindness”.

Hope – it’s an interesting thing.  Some might see it as just a filler, just something to say when you don’t now how to handle something “Well, let’s hope for the best.”  Interestingly enough, I don’t know that people know the true power of the word hope until there is none.  When we are told there is no hope for a bad situation it magnifies the feelings of pain, of suffering, of sadness.

[Tweet “I don’t know that people know the true power of the word hope until there is none.”]

I was told sixteen years ago that there was no hope that there would ever be anything anybody could ever do to restore any vision in my blind son.  But just nine years later the team referenced in the article believed that after years of studying their scientific theory they were ready to try it out to see if indeed they could restore vision in blind children.  They gave me hope:  Hope that my blind child might one day see.  That hope that picked me up off the floor of sadness.  That hope allowed me to put my rose colored glasses back on.  That hope has carried me a long, long way.

As I said I met Christian.  I saw the vision restoration first hand in how he navigated.  I saw it in how he could look directly at people he was talking too.  I saw it in the lack of awkward body language, the lack of bumping into things, the lack of needing a white cane.  What he used to lack in vision function he now had, and I was stunned, excited, and full to the brim with hope for my sons.

I originally posted this blog over on the site of the non profit I Co-Founded and lead, the Curing Retinal Blindness Foundation, back in July 2014 after we met Christian for the first time:

michael-and-christian-with-website-225x300This is a picture of two young guys that met at a conference this summer in Boston.  They had never met before, yet they became fast friends.

The guy on the right is my oldest son.  He and the other boy have a few things  in common… each is a gifted musician, each has a smile that lights up a room, and each has a personality that draws everyone to chat with them.  But they have one major difference… the boy on the left has something my son wants to have soon… very soon.

The conference where these two  met  was for a very rare,  degenerative, blinding disease called Leber’s Congenital Amaurosis (LCA).  Both of these guys were born with this devastating disease.   Kids with LCA are either born blind or nearly blind.  Regardless of the acuity and visual field at birth, pretty much all LCA patients are expected to be “legally blind” by their late teens.  And that “legally blind” status ranges from not being able to read regular print to not even being able to see light.  Most LCA kids are”so blind” that they read Braille and use a white cane.  Their field of vision grows smaller every year as  their vision cells are dying, leaving their window to the world cloudy, spotted, and small… very, very small.

Like I said the new friend in the picture has LCA also.  I snapped this picture when I was following the boys around an unfamiliar place where we attending a barbeque.  There were hallways with lots of people, paths that turned this way and that, and ultimately a large field of picnic tables, trees and playgrounds to navigate.  If you look closely, you will see that my son is being guided by his friend… the friend that has LCA just like him.

You see, the difference between the friend and my son, the thing he has that my son wants, the thing I want my son to have… is sight.  This guy received gene therapy earlier this year.  The therapy actually restored a large amount of his vision…  and now he has enough sight to guide my son.  He has enough sight to navigate without a white cane.  And he has enough sight to actually see the people he is talking to, see obstacles in his way, and to see across a room (or in this case a  a courtyard) to where it is he wants to go.

I want that for my boys (I have two sons with LCA).  I want it for all of the kids living with LCA and other retinal diseases.  And my boys want even more: they want to be able to pick up a print book and read it instead of waiting for a brailled copy.  They want to walk through schools and malls and parks unassisted.  And one day, they want to get their driver’s licenses.  These things were impossible for my sons and the other thousands of kids with LCA just a decade ago.  But by the grace of God, the miracle of science, and generous support from lots of donors, we are getting closer.  Dollar by dollar, project by project, trial by trial, we are getting there.

[Tweet “But by the grace of God, the miracle of science, and generous support from lots of donors, we are getting closer.”]

Kristin Smedley co-founded the Curing Retinal Blindness Foundation and she and her family, together with their community in Bucks County, PA, host the largest CRBF fundraiser, Bike the Basin.  If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.    Together we can do so much.

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About Kristin Smedley

Kristin Smedley is the Best Selling author of Thriving Blind: Stories of Real People Succeeding Without Sight and Brilliantly Resilient: Reset, Rise and Reveal Your Brilliance. A recognized expert in the blindness and rare disease communities, Kristin won the highly regarded Champion of Hope Award and was named an Ambassador for the National Organization of Rare Disorders. Kristin is a popular, in demand speaker who has been invited to share her message internationally.


As CEO of a global patient organization, she coordinated legislation (H.R. #625) that became the first in US history to be submitted in Braille. Kristin spoke at the FDA to help achieve the first ever FDA approved gene therapy to treat an inherited retinal disease in the United States. Her TEDx Talk, book and international summit change perceptions of blindness, and sparked a global movement, Thriving Blind Academy, that is solving the unemployment, literacy, and financial crisis in the blind the community.


During the COVID-19 pandemic, Kristin co-founded Brilliantly Resilient to help people come through life’s challenges and setbacks brilliant, not broken.