I frequently add text and sometimes borders to my photos but I am not a big fan of using filters. I recently heard that Prisma was cool so I thought I would check it out. Both of the names Lone Wolf and Dreams remind me exactly of what life with Duchenne has been like. So of course I had to apply both filters to the photo I took of Ashton and I before heading out to Iowa City for his two day clinical trial screening.
Ashton’s first year was very worrisome. That was followed by a bit of time I was able to keep worry at bay. But the last eight years have very much felt like I was a lone wolf searching for answers and fighting for Ashton to get the medical care, therapy and educational support that he needed. And all while hoping that everything would be fine, we would make it through Ashton’s challenging life, that he would be happy and live a full and long life. Many times these hopes have seemed to be only dreams.
Today was a very long day of traveling! We finally arrived at our hotel after 7 hours, 4 bathroom stops, 350 miles and 2 detours. This is all about both the journey and the destination. The next two days will prove to be nerve wracking and tiring. Ashton and I are both very excited to finally be here and scared about what is next. But I came prepared with an inspiring nightlight and yes, mommy needs a beer!
This will be a pivotal moment in his life with Duchenne. The clinical trial could be helpful for Ashton, it could turn out to be harmful for Ashton or the trial could be shut down because the data does not appear to prove anything significant. I have absolutely no idea how this will all turn out. I can say having had Ashton screened for a clinical trial twice before that it feels so much better as a parent to be doing something to try and prolong the inevitable instead of just waiting and helplessly watching the inevitable as it happens right before your eyes.
This is by no means a cure for Duchenne muscular dystrophy. In fact, I do not even believe that there will be a cure, at least not during Ashton’s lifetime. But the knowledge about Duchenne and the medical care for Duchenne has come so far the past few decades that the life expectancy is much longer and the quality of life much better. Boys with Duchenne and Becker need several different approved therapies to try and combat different aspects of their genetic illness. I am so proud of Ashton that he is willing to have a part in this and hopeful that Pfizer’s myostatin inhibitor will prove to be beneficial.