Celebrating ten years post transplant thanks to gene therapy! Happy Re-Birthday Eli
If I close my eyes, I can be right back to the room, laying with Eli in bed trying to calm his anger and moodiness. I can see a team of people walking in through the double doors with a briefcase in hand. A briefcase that held a large syringe filled with Eli’s new cells. A syringe that would take less than an hour to slowly empty through Eli’s port. A pizza party ensued and then the waiting began.
I’m sure Hut and I both remember the day vividly, the day that we believed Eli’s life would be spared from succumbing to the horrific disease known as MLD. Sharing laughter and tears, but most of all gratitude!
I went to bed last night pondering on the last ten years and the gift that we have received with gene therapy. Every year hits me different and this one has me thinking not just about Eli but about Eric and Evan.
As I was with Ella at her field trip to Dorney Park yesterday, it hit me that this is how old Eric was, when Eli was diagnosed and went through treatment. 8th grade! Evan was in 6th. Some of the same teachers that Ella has, Eric had as well. I can only imagine how hard it was for them watching from afar as their brother then sister went through something that we couldn’t even comprehend.
Their lives were changed in so many ways when the kids were diagnosed and as I remember back to the day we shared with them about Eli’s MLD diagnosis. I remember thinking how in the world can these boys go living a “typical” life knowing that their brother might not have many years to live… then their sister also. As hard as it must have been, they have done an incredible job, and I believe Hut and I did an amazing job being honest with them about everything, living in the moment and teaching them that today is the only day that matters.
Thankfully over the last ten years we have been able to make numerous memories, watch them ALL grow up into wonderful human beings, and the best part has been watching them treat Eli like they did before MLD. Playing sports, wrestling with him and of course getting pissed off at him. (Come on Roman Reigns, can you please lose) They have NEVER felt sorry for him more than a handful of times in the last ten years, which makes me so proud!! I believe that they have learned so much about life… pain, grief, joy and most of all never giving up!! Thankfully, I believe all these lessons will be with them forever.
Today we celebrate Eli! We celebrate the scientists, doctors, nurses who have made this second chance at life a reality. We thank them all, along with our family, friends and community of supporters for lifting us up when we simply didn’t know how to keep going. One foot in front of the other, one day at a time… it’s the only way and it’s how we got where we are today, ten years later!!!
To Eric and Evan, there are no words to ever express how sorry we are for the ways that your life has changed, but we know one thing, and that is Eli would not be who he is today without YOU!!!
Ten years of not thinking about time, when at the beginning that is all we thought about. How much time do we have left with them? Thanks to gene therapy, we don’t think about time as much anymore, at least not in the way we did back then. Eli is now a senior! God willing, next year we will watch him walk across that stage and get his diploma! A day that we never imagined happening almost 11 years ago when he was diagnosed with MLD!!
Gene Therapy saves lives!
Fear Not 