So we got invited to speak at the Rare Disease Day event in NYC sponsored by Rocket. We were honored to be invited to such a special event to share our story with the hope to inspire and spread hope to others. I believe we accomplished that! I had so many Rocket employees, including the CEO, primary investor and main guys at the lab (Rocket is the pharmaceutical company that is sponsoring the trial) come up to us afterward and say how inspired they were. One gentleman said he has been in pharmaceuticals for over 25 years and has never got to meet someone he has helped. Several others said the same, that they have never got to meet the person and hear the story from the other side. Had another couple say how much they loved all the bible verses I incorporated into the slideshow. The room was packed with over 200 attendees. The event was purposely held at the historical NYC landmark Carnegie Hall because music with medicine inspires and gives hope. Which I can say first hand is 100% true.
We heard from several other patients that have either been cured or still living with a rare deficiency. It was amazing to hear their journeys and how they continue to hold onto hope because hope is crucial. Your perspective is crucial in how you will survive any storm.
I learned that they are working hard to help children around the would with this rare and deadly deficiency.
I learned that they worked so hard for 2 years straight before the trial was even approved for L.A.D. No wonder God was speaking to me and telling me to not agree to the BMT!
In saying all that, we have decided NYC is not for us haha! Too cold, too dirty and too much traffic. Marley did get to see some snow flurries on Saturday, the rarest day of the year. We visited Central Park, Times Square at night and even the Statue of Liberty viewing point buutttt we were too far away to get a good picture. They lit up the Empire State Building in honor of Rare Disease Day which was awesome!!
The takeaway – if you are in the middle of a difficult decision, I challenge you to listen because God will direct you. We have to learn to stay hopeful during the waiting period.