Yesterday was a challenging day for the gastroparesis community as we said goodbye to one of our own.
Julie Werner was born on March 22, 1982. During a trip to Australia in 1994, she developed symptoms she thought were related to a flu-like illness she obtained there. However, after she did not get better she was eventually diagnosed with gastroparesis and chronic intestinal pseudo-obstruction.
On Oct. 25, 2008 Julie received four organs (small bowel, stomach, pancreas, duodenum) at the University of Miami. Although she did well the first few days after the transplant, her condition deteriorated rapidly and continued to do so. After a tough battle with respiratory problems, unexplained fevers, possible rejection, kidney problems, ongoing infections, and eventually septic shock, Julie passed away this morning, Jan. 27, 2009 at around 10:30 AM.
Julie became part of G-PACT in September of 2006. With a degree in communications and public relations from Michigan State, she was an incredible asset to our PR department. She always had a lot of ideas and shared them openly with me and the G-PACT board. She was in the process of creating an awareness kit for our organization, and put together a lot of information and ideas to help us reach out to media outlets. Not long before she left for Miami, she sent me all the information she had worked on so that we could continue in her absence. Because of her, we have an excellent resource of information that we are already using as we prepare for the DDNC in March.
Julie was passionate about G-PACT with a huge desire to return in full capacity upon recovery. She was a top fan of the Detroit Red Wings and loved Harry Potter! She sacrificially gave her time to G-PACT and faithfully attended scheduled board meetings, even when she was not feeling well.
Julie has had an impact on the lives of so many of you with GP and will be sorely missed. I personally am in a state of shock and completely devastated. Although I knew she was not doing well, I really felt like she would be able to pull through. Many of you have been following her progress for a long time. She was loved by many.
If you would like to send a card, flowers, or gift to the family, please contact me privately through FB or e-mail me at firstname.lastname@example.org and I will send you the information you need. I will also post more information over the next few days as it becomes available. A website is available for updates from her family as well at http://www.caringbridge.or
Julie's death was a blow to me. Although I have lost even closer friends before, there is something about this one that just isn't right...not that any are right, but for some reason this one is really getting to me. I feel such a sense of loss. It has been a really tough year, but particularly a rough couple of months. I am inspired though...so many people have responded with comments on how Julie impacted their lives and a surge has erupted in the GP world to fight even harder now. G-PACT has gone into overdrive in trying to push our initiatives even more. We've added some new goals and pushed harder on the ones we already had started. We are determined to speak out at the DDNC very loudly. We will no longer be ignored or blown off! This just can't keep happening simply because the FDA won't approve medications and the government won't take these seriously!
I'm mad. I don't understand. I'm not mad at God...I'm just mad. Maybe at life in general...maybe at those who won't listen...maybe at myself for some reason...I don't know. It's just not right! The good thing about my anger is that I am channeling it into good things. I have accomplished so much in the past 24 hours because I am so bound and determined to get things moving much faster before this happens again. We WILL fight this. And we WILL win.