TitaniumAmy Goes to Washington

On our last morning at the NIH brought a test that looks like something out of a horror movie. As usual, TitaniumAmy took it all in stride. Her opthalmic technologist was a complete (extremely competent and professional) goofball, and the two of them spent the whole time cracking jokes. A full 30 minutes in a completely dark room was followed by looking at a series of flashing lights. Her eye responses were monitored by a special set of contacts that attached Amy’s eyes to electrodes that sent data to a wired computer.

DSC_0031 (2)The upshot of all of the exams is that TitaniumAmy’s bionic eyes seem to be functioning very well given her diagnosis and her age. That in a nutshell was the very welcome theme of this whole trip. We still have a few results to return, but our girl is continuing to defy the odds, and we won’t need to come back to the NIH for 2 full years!

After morning appointments, it was time for TitaniumAmy to take on DC. First stop was Senator Kamala Harris’ office, where Citizen Amy submitted her request that the Senator fully support the NIH, because it is important for people with rare diseases “like me.” It was pretty cool to see her taking steps toward advocacy. Then, onto the International Spy Museum where we took the “escape the room” adventure. Our team got a perfect score, so if you need any spy assistance, we’ve got you covered.

Ford’s Theatre was our next stop. In our wanderings, we took the accessible elevator to the museum level. When we got off, we realized nobody was there and the lights were dim. The last tour of the day had gone. We were alone in the whole museum space. Of course we got back on the elevator and left…not. We figured if we were caught the worst that could happen would be getting kicked out, and so there was nothing to lose. We toured the museum space all alone, which was sorta cool and sorta creepy, but definitely an adventure. [Below left: see the people behind Amy? They’re statues. We are the only living people in the museum space! Below right: The one-shot pistol John Wilkes Booth used to murder Abraham Lincoln]

Last treat of the trip was meeting longtime friends in Bethesda for dinner. It was great to have a non-cafeteria meal, and even better to have really wonderful company. A stop at Georgetown cupcakes and our adventure in D.C. has officially come to a close.

Thank you so much for sharing our journey with us. We definitely felt your support and encouragement. The outcomes could not have been better. We are so very grateful to be able to access the world’s best doctors and hospital for our girl. Please continue to vote your support for the NIH – it helps all of us, but especially those with rare disease who need it most, like TitaniumAmy!

 

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