We are in Chicago attending a Battens Research Conference. This is our first one, and the material was so over our heads. I was googling every third word to keep up with the conversation. We got a crash course on metabolic disease and science behind gene therapy.
There were over 75 people in the room, all dedicated to research and finding a cure for Battens disease. Even though we might not have understood exactly what they were doing, the passion they were presenting with gave us hope, there are smart people committed to making this happen.
We were able to meet with the companies that are currently doing gene therapy for other CLNs and we met the company that are working for one for our kids. We realized the process is tedious and complicated and the research just isn’t there yet that it will work for CLN2 kids. It was hard to hear, initially they thought this was something that could happen in 2020, that won’t be the reality. Of course, this isn’t something that can be rushed, you only get one shot at gene therapy, so you want to know its going to work.
These are hard decisions Mark and I will have to face in the future. Time is not on our side, and we are already having to make tough decisions about her quality of life. Right now, we have to decide if its time Claire gets a feeding tube, and this is something we are not taking lightly. We have been struggling with her weight and appetite for a very long time, we are worried that the lack of nutrients she is getting will be enough to give her energy and keep her healthy.
While we are in Chicago, we attended a Gala for CLN2, put on my parents who have already lost their children. Their strength to continue this fight is so inspiring. Spending time with other CLN2 families was great and we continued to network and made some meaningful connections that will help us along this journey.
It was extremely hard to be away from the kids; I want to thank my extremely supportive in-laws for always being there to take care of the kids and make sure they have everything they need and more. It takes a village to raise a kid, and even more then they have special needs.