October 08th, 2018

Some days it's really hard to think that Ethan will some day lose his vision. Right now he is so "normal", he's happy, healthy, outgoing, fun, loving... how is it that could possibly change? Now I know that losing your vision is small potatoes compared to many of the things that many other children/people deal with; and yet, it's not altogether small. No one wants to lose their ability to see. I have been reading about some of the clinical trials that are happening right now and it warms my hear to know that there are several that are focusing solely on treating/curing the type of Retinitis Pigmentosa that my son has. There are so many forms, but Ethan's is the most common and the most severe. The trials are only in their first phase but there is so much hope there!! What if they could actually come up with a treatment/cure for this in Ethan's lifetime? How surreal would that be?! How amazing would that be?! So we keep fighting! We keep raising money, we keep raising awareness, and we keep trying to raise a boy who will conquer this world, vision or not. And we keep holding onto the fact that despite the fact that he may lose his vision, at least he has had the opportunity to see! He will have the images he has collected over his lifetime in his memory forever. What a gift!! 

http://www.blindness.org/blog/index.php/meiragtx-treats-first-patient-in-xlrp-gene-therapy-trial/

www.ndcn.ox.ac.uk/research/clinical-ophthalmology-research-group/trials/xlrp-gene-therapy

Check out these articles on some recent advances! (2017)