Updates from our Tay-Sachs Disease Conference- Part 1

We finally made it back home safe from Florida last week Sunday, Apr 11. Again, I cannot stress enough how glad we are to have attended this conference. It was such an amazing feeling to meet wonderful people all over the U.S. (and the world) who know exactly the pain and journey that Ferd and I are going through. On day 1 of the conference, we met with all the parents of affected children in one big conference room. It was a bit overwhelming at first, but as we got through introductions, it was fine. Of course like many, I got very emotional as I introduced myself and Gavin. There were also many people in the room that had lost their children that it made me feel so uncomfortable and worried that they would lead me to lose hope, but boy was I wrong. It was so inspiring getting to know some of these individuals who have lost their children as they share wonderful stories and photos of their angels. They continue to give Ferd and I a lot of hope as they claim that the medical technologies and scientific breakthroughs have evolved and advanced dramatically over the past few years. 8 to 10 years ago, a mother told me that when she attended the conference, there was not much said about research let alone gene therapy and the message that she primarily got at the conference was to make her affected child comfortable as much as possible until the day came and that was it; but now she offered us a lot of hope as she was astonished with all the trials for experimental medication, advanced equipment, and gene therapy studies. Everywhere in the conference, we met several affected children; a majority of those were with the infantile form of Tay-Sachs Disease. It was comforting to see some of the parents feeding their children through the g-tube and suctioning them with the suction machine. The minute I heard the loud buzzing sound of the suction machine as a parent suctions her child, it was like music to Ferd and I’s ears. More updates to come shortly….