I went to a memorial service for a four year old this week. That's right - four years old. I had never met Eli, but I knew of him because his uncle is a friend of mine whom I was stationed with when I served in Sicily from 2008 to 2011. Eli's mom, grandmother, and grandfather had come to visit and we had a few BBQs and outings during their stay, which was well before the little guy was born. Technology being what it is, Eli's grandmother, or I, sent the other a friend request on Facebook and remained in touch over the years.
From what his mom said at the memorial service, they always knew that Eli's body was battling something on the inside, but didn't know exactly what that happened to be. Around this time last year, the disease manifested and it was the start of Eli's hospitalization. Eli was diagnosed with Evans Syndrome alongside a still unnamed autoimmune deficiency disease that was similar to bubble boy syndrome, or Severe Combined Immune Deficiency. He started off at Wolfson Children's Hospital, here in Jacksonville, before transferring to Duke for a stem cell/bone marrow transplant. It takes a long time for new stem cells to start growing and Eli passed away right in the middle of this growth period after battling both adenovirus, spots of pneumonia, and facing other obstacles including the failure of his kidneys. It came down to the fact that he had no antibodies to fight off the infections, and by this point, multiple organs and systems of his body had begun to fail. Sadly, Eli passed away on July 19, 2015.
I'm not sure when I started following Eli's progress. Throughout, I've always checked in on the Facebook page, Eli's Journey, that his mom created to chronicle what their family was enduring all while sending every positive thought and vibe that I could muster. Myself, my sister-in-law, and my nieces wore green on the day that Eli received his stem cell transplant and I plan to volunteer at Black Tie for Eli (a semi-formal dinner to help fundraise for the family's medical expenses). You can learn more about attending, volunteering, sponsoring, or donating items to the silent auction for Black Tie for Eli in the video below and at Love4Eli.com.
As a very distant friend of Eli's family and an Aunt since I was 11 years old, Eli's journey and passing has affected me much more than I had ever thought. No one should ever have to endure the amount of pain that this child did. No one. His mom said that the doctors never discovered exactly what Eli was fighting, just that they knew what it wasn't. Eli deserved more than that. His family deserved more than that. I couldn't imagine if something like this happened to any of the children in my family, but it is why I participate in and dedicate so much of my time to Extra Life and everything that we are doing to promote the Extra Life Jacksonville Guild.
I've had a few people tell me that playing video games and board games for 24 hours, in a Relay for Life or Jump Rope for Heart style event, isn't doing anything to help the situation at hand for children, like Eli, who are patients at Wolfson (my chosen and our local Children's Miracle Network hospital) and who are facing life-threatening illnesses and injuries. I could, easily, write a check and put in the mail addressed to CMN, but I choose to co-lead an incredible team who believe in helping and putting forth positive change in the lives of children and their families. While we have a blast at our marathon event each year, reality is not lost on us. If anything, having a personal connection to a child makes it clear as day how important it is that we do what we do.
I was starting to doubt my involvement as of late because there has only been a handful of us that get out there to spread the good word of Extra Life and the crucial assistance we provide to Wolfson. We are an all-volunteer group. Sometimes, when you are one of a few that is constantly doing outreach, the negativity can get to you; I won't lie. However, after this weekend, the unsteadiness has passed and I am ready to go full bore #ForTheKids for the rest of the year. I will be dedicating my marathon hours to dear, sweet Eli.
If you're motivated and want to join us as we fundraise for Wolfson, please consider joining our team on Extra-Life.org under Extra Life Jacksonville Guild. Just hit the "Join" button. You can also create your own, just make sure to choose Wolfson Children's Hospital if you are in Jacksonville, so that all of your donations help local children. You can, also, donate to my Extra Life fundraising page, if doing the marathon is not your forte.