Eye Doctor(s) Visit at the University of Iowa - January 27, 2015

We just made it back from the eye doctors at the University of Iowa. Dr. Wilkinson is a low vision specialist and Dr. Stone is a retina specialist -- who was actually on the phone with a billionaire donor today who has gotten a fellow billionaire to also donate money towards retina gene therapy, that hopefully one day will help children with peroxisomal disorders and many other rare diseases.


It was our first visit with them in over 3 years, but now that we live closer and it is a 2 and 1/2 hour drive versus a 4 and 1/2 hour drive we'll be going back on a yearly basis.


Both doctors were very happy with how well Ethan is using what vision he has and his overall development (the last time they saw Ethan he wasn't even a year old yet). It is so nice to see doctors who know about PBD-ZSD and who really focus not on a number in regards to what Ethan's acuity is, but rather what Ethan is doing with the vision he has. BEST NEWS --- Ethan's far-sightedness is no longer significant enough to really warrant glasses (especially since he has never accepted them and their philosophy is that if they helped him enough he would wear them), so they are in agreement that glasses wouldn't serve any real purpose at this time. Ethan's vision still sucks because he has PBD-ZSD, but at least I feel so much better about his refusal to wear his glasses, and now I have permission to not worry about them at all!


Overall, it was a great visit.

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