The first person I told was a dad I know. His family is one of too many that have made the ultimate sacrifice to Batten Disease. I let him know that Maya received her first infusion today. I shared with him how surreal it was to see the nurse walk into the room with the replacement enzyme that Maya needs. He is a friend I look up to and respect. I wanted to convey how thankful I was for his friendship, his family's sacrifice and their unparalleled dedication in working to save as many people as possible from the horror that is Batten Disease.
If you are confused, its okay. You see, about a month ago, we were told that Maya had been accepted into an expanded use (compassionate use) program for an Enzyme Replacement Therapy. I won't go too much into the therapy, but you can read about it here. The results thus far have been very promising in terms of this therapy slowing the progression in kids with the classic form of the disorder.
In order to participate in this program Maya had to relocate to Columbus, Ohio for four weeks. She will need to return every two weeks. Suzette and I have commuted back and forth to be with Maya and to spend time with the boys back home.
Right now, I'm not up for writing much about the last couple of weeks Except to say that I'm exhausted. However, there are two important things that I want to get out there:
First, the FDA is set to review this therapy for approval in early 2017. I can't emphasize enough how important this review and approval will be for so many families. Words can't capture it.
Second, I'm ridiculously thankful. From my parents who jumped in at a moments notice to care for the boys during this last couple of weeks, to our friends who delivered meals, provided transportation, visited Maya, sent gifts, checked in on us constantly, worked untold magic in the background, to the insanely wonderful people of Columbus, Ohio who have shown us what makes the midwest so beautiful. I can't even begin to explain how much people have opened their hearts and supported our family through this waypoint. (I will post more later about the great people of Columbus)
For now, that's about all I have to share. Maya is good and in great spirits. This is a monumental milestone for us, but we (i.e., #FightingForMaya) still have work to do.
Thank you for your continued love and support.