Washington DC – May 2014

I took my fight to Washington DC during the first week in May 2014. It was my honor to join approximately 50 fellow victims as we fanned out across Capitol Hill, following a tight schedule full of meetings to speak to countless Senators, Aides and anyone who would listen.

After our scheduled meetings each day, we had time to learn each other stories and bond. While I was grateful to be around people who understood my fight, it was heart breaking to hear that I was not alone. I was able to teach a mini-class on self-administering IV’s and shared as many of the lessons I’ve learned through my journey as I could.

They took great care of me and kept me safe.  A wheelchair pusher picked me up at the curb and got me to the gate in Denver and a fellow “floxie” was waiting for me at the gate to accompany me on the plane. I was picked up at the gate in DC and escorted to my hotel room. They had an electric scooter for me to use to get through those huge buildings (those things are a lot faster than I expected). The logistics were planned out in advance and they even provided transport to and from each meeting. When I needed the world to stop they helped me get to a quiet dark place to rest.  Without them, I could have never made this trip and I am forever grateful to everyone who helped.

The days were packed with meetings all over the hill and there was also a group on the streets handing out information. I couldn’t do nearly as much as all of the others did.  I was able to make a few of the more important or higher priority meetings in the time I was there. I spent a majority of the time at the hotel. But still, I was heard. Some of the others carried my before/after pictures to meetings and around Washington as well.

There is far more work to be done, they give these drugs to children now.

A deep and sincere thank you to all who made this possible for me.

 

My mother pushed my wheelchair around DC during some downtime between meetings, stopping to take in some of the sights while we were there.

 

Washing DC Hearing

Just outside of the hearing room before we met with a special panel toward the end of the trip.

 

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