If you are reading this post, then you probably know our little guy Joseph has been diagnosed with a super rare and terminal disease, and that we are all working our hardest to fund a gene therapy trial in time for him at UTSW and Children’s hospitals here in Dallas, TX.
What you might not know (and we get this question a lot), is how are we all doing with this? And why are we still smiling…?
Well, we want to tell you – mostly because our goal isn’t just to get to gene therapy for Jojo, but also to help others in some way, by sharing this amazing truth that we are learning: living doesn’t stop because of dying. Which leaves us with the more important question of, how are we all living?
So when we learned that a clinical trial could stop Joseph’s disease from progressing, that we could realize a trial possibly in time for him, that it would require more money than we could easily access, and all of this is on the cutting-edge of science, we had decision moment. We decided that we would work together with family, friends, and our community to do everything in our power to leave nothing on the table with this disease, whether results come in time for our family or for the next. And we decided we would do these things with the purpose of being joyfully at peace with the outcomes in the future.
This simply means that we must LIVE. Live by being fully present. Live by loving each other through our difficulties. Live by having no regrets about how we have spent our precious time together (preferably smiling and laughing – A LOT).
We have been blessed in this process with an awareness and appreciation that did not exist at these levels prior to this experience. Together we will do this work and walk this journey full of highs, lows and hardships, by working for the possibilities that are available, working to realize progress not yet made, and most importantly by making every effort, every day, to celebrate each and every moment as a family and community working through life. We are given this day only, but are so hopeful of many to come.
So “Joseph’s Journey” blog posts are about that – our perspective and updates on Joseph.
We are not saying it’s easy, just that it has been a beautiful and amazing journey so far, and we have moments of extreme gratitude for the gift of presence we have been given.
We hope you will check in with us to see what we are learning along the way, and that if you haven’t already, you will read Joseph’s Story
Thank you for joining us in this journey!
Gina & Matt