From Jacksonville, FL to Portland, OR. It sounds strange to travel that far just for an historical clinical trial but we did and we will be doing it at least three more times. If all works out the way it should, and the trial leads to a gene therapy, we will travel the distance even more times. Heck, I've been telling my son since he was born that I love him from here to the moon and back again and again. So, what's a mere 3000 miles to find a cure for his x-linked juvenile retinoschisis?
From the time I scheduled the trip, I wondered if I was doing the right thing. It was so far away and the kids are not used to that kind of travel. Plus, if it means they are disconnected from any electronics, things could go downhill quickly! We tried to schedule as many cool tourist things as we could around the doctor visit.
The minute we got there, I knew in my heart we were in the right place. Brendon (my son) loved it there which was crazy because Brendon always has some trepidation when it comes to experiencing new places and things. It was a sign. As crazy as it sounds, Portland became his new love. To this day, he still says "Everything is better in Portland" and he can't wait to go back.
After a really long day traveling, we got there and made it to the hotel. The next day, Brendon and I made it to the Casey Eye Institute at the Oregon Health & Science University.
This place is awesome. It's an unbelievable hospital on a giant hill (what we would call a mountain in Florida). You can literally take a sky lift to get there if you want.
To our delight, when we got there, we were immediately greeted by Joycelyn, the study coordinator. We were quickly escorted to the area where we would spend the better part of two days getting Brendon tested with all the tests that are truly miserable for him. Something about being in this place and being treated so nicely made it different though. Even Brendon seemed to be doing okay through the tests. Here he is with Joycelyn.
Here he is again... still positive!
OHSU actually gave us the results of Brendon's tests on a CD which was really cool. Here is his OCT scan. All those gaps you see are not supposed to be there.
This is what his OCT should look like. No gaps with a nice dip in the middle. Brendon has no dip. I know that's not the technical term but I'm going to call it MOM language...
The next test is the visual field. Most of us see 180 degrees around us. A nice circle of vision that is basically a dome and we can see one half of it. Here's what Brendon sees. If he had full sight, you would see two circles. These certainly aren't circles.
Here's an image that shows how his retina is in pretty bad shape (again - MOM language). The dark areas clearly show where things are going very wrong with his vision. I truly wish this were a simple picture of Mars, but it's not. There should be no dark areas!
None of this was news to us. We knew these results would be the same as the results we've been seeing since Brendon was three months old. What was new to us was the fact these tests were being done by people who are literally spending their days trying to find a cure for Brendon and others like him. Let's face it. This is a crazy rare disease. The fact that people are trying to cure it is simply amazing. They have my utmost admiration and appreciation. And we will travel 3000 miles as many times as we need to help them help us.
Dr. Pennesi and Joycelyn Nimi - Thank you for giving us hope!
Dr. Grover & Foundation Fighting Blindness - Thank you for connecting us to Dr. Pennesi and Joycelyn Nimi!
Casey Eye Institue - Thank you for being in such an awesome place!
If you want to help this awesome cause, you can donate to MOMS for Sight. We give to the Foundation Fighting Blindness, an organization that funds the kind of research that will cure my family's x-linked retinoschisis and many other retinal degenerative diseases!
I mentioned we saw some touristy stuff too. Between the waterfalls and the Pacific Coast Highway, we were in awe of Oregon. It is truly beautiful. See our pictures below. The only things I don't understand are the on-ramps where the traffic lights only let one car from one lane through at a time. I did enjoy letting someone pump my gas. I remember full service gas when I was little and my mom used to get her tank filled by the nice guy at the gas station. Apparently, in Oregon, it's law. We will be going back for a follow up at OHSU in February so hopefully, we'll have skiing pictures from Mt. Hood to show next. Brendon has never seen snow and he's usually pretty cautious about heights. However, since we'll be in Oregon, my guess is he'll be ready to try another new experience! After all, everything is better in Oregon!