After the Baseline

The baseline went well. Nomi was a real trooper. He has undergone many tests for the past 4 days. He has had his moments, as we expected based on the last time we were here. He hated the eye patching, blood draws, and eye drops, but other than that, he held it together. He completed all the necessary tests.

Today, during the testing, we had an opportunity to meet Christian Gaurdino. He is a 13 year old boy from Long Island who was diagnosed with LCA due to RPE65 when he was 6 months old. 

Christian had the procedure done earlier in the summer. He was in town for his 90 day post op follow up. 

Speaking to Christian and his mom Beth was great. It was nice to see a family going through the exact same process as us. Hearing him speak of his vision before and after left us feeling optimistic and hopeful. The most poinigant moment came when Christian described seeing the moon for the first time, describing it as "amazing". It brought tears to my eyes.  

As people with sight, we have all seen the moon hundreds of times, and we all take it for granted. Hearing him simply call it "amazing" really does describe it in a way I never could. I don't think I will ever  look at the moon the same way. 

Beth will share Christians story with us, and I will be sure to post it to the blog for all to read. 

Here is a picture of Nomi and Christian. 

All of Nomis tests went as expected. There were a few inconsistencies in his blood work. This does not interfere with his eligibility for the study, but it does require some repeat labs tomorrow. The fear is that if something is uncovered after the procedure, the FDA May feel the procedure caused it. So it's important to make sure nothing is wrong, or if it is, to know of it beforehand. 

The big question that was to be answered this trip was the randomization. Was Nomaan going to be in group 1, or would we have to wait 12 months?  At around 3:00pm today, they told us. 

I am pleased to say, that Nomi was placed in the immediate intervention group, group 1. 

Inshallah, Nomi will have his left eye treated on October 24th, and his right eye treated on October 31st. 

This his been a very long, emotionally taxing journey. We are finally at the finish line. We could not be happier. Allhumdullilah.