This past weekend, I had the opportunity to attend the United Mitochondrial Disease Foundation Symposium in Pittsburgh. Since Grayson was diagnosed, I have wanted to attend Symposium, and I am so thankful that the stars aligned and I was able to go. One of the major reasons I especially wanted to go this year was one of my closest Mito Mom friends moved from Houston to Pittsburgh a year ago, and I just couldn’t miss the opportunity to spend a few days with her. I’m so thankful for K-she is probably the smartest and most compassionate person I know, and she has been one of the most influential people in my life since we started this journey.
It was a great weekend. I was able to make connections with people I had only previously “known” on Facebook, meet new friends whom I felt instantly connected to because of this strange world we live in, and soak up lots of information that hopefully I can use to help Grayson.
I attended as many sessions as I could, and while some of the scientific research information was over my head (those researchers and doctors literally speak a different language!), I really do feel like I have a better understanding of Grayson’s disease and the direction the research to treat/cure Mito is heading. I learned about medical child abuse (and how to protect myself from any accusations)straight from the mouth of Justina Pelletier’s doctor, learned about research being done on autism and mitochondrial disease, and was reassured in the respiratory issues session that we are doing everything “right” with Grayson right now. There was a lot of talk about clinical trials and Epi-743- I am still hopeful that Grayson will have access to this life-changing drug sooner than later. It’s still extremely frustrating that he is not on the drug RIGHT NOW, since it has certainly been life-changing for many with his disease.
I had several really good conversations with doctors, including Grayson’s Mito specialist. We came up with some new ideas of medications and supplements to try, and I was thrilled when I got an email this afternoon from her nurse saying that she was already calling in the new prescriptions. I am so, so hopeful that we will see some positive changes in our little guy in the coming weeks!
It was a wonderful weekend and I am so, so glad I had the experience. And everything went great at home while I was gone- hooray! I’m already plotting how to get to Washington DC for next year’s symposium!
|At the banquet Saturday with new friend C and K|