Welcome to Lifting Lila,

a blog dedicated to helping families affected by Vici Syndrome while increasing awareness of the extraordinarily rare and newly discovered disorder.


Vici Families

 Story of James Kurtz
   Parents: Joe and Nichole Kurtz- Hotchkiss, Colorado

All women have fears when they are pregnant. My biggest fear when I was pregnant to James was how does a mother love two children? I remember crying to my mom on the phone one night asking “what if I don’t have enough love in me for a new baby?” I just love Joseph, James’ big brother, SO much that I didn’t think it was humanly possible to love TWO children that much. All my fears evaporated the second I gave birth and saw James’ beautiful face.
When James was almost 6 months old he was diagnosed with Vici Syndrome. A death sentence, that’s all I remember thinking. This doctor just came in and basically told me that no matter what I do, my son will be leaving me, sooner rather than later. As a mother, all we want to do is protect our children, but I was just told that there was absolutely NOTHING I could do to protect James.
It was October 2, 2009. I sat in his hospital room at Children’s Hospital in Denver and cried all day. Finally my mom said to me and my husband Joe, “we can’t sit here and grieve James while he is alive, there will be enough time to grieve him when he’s gone.”
In that moment we decided we would give James the best life we were able to and not limit our family because of his diagnosis. We made every one of his “milestones” and holidays a BIG event, never knowing which celebration would be his last.
There were nights when I would lie next to his bed when he was very sick and think “This is it. When I wake up in the morning, he’s going to be gone.” I would pray, ”God, please let his passing be as peaceful and painless as possible.” I would lie awake night after night, watching his monitors, adjusting oxygen levels, suctioning his nose and throat, dosing medications for seizures, heart failure, congestion and fevers. I wasn’t just his Mommy, Joe wasn’t just his Daddy; we were his caregivers. Providing every type of care imaginable, from nursing to respiratory therapy, PT to OT, it all came down to US.
James spent his last FIVE months of life in Children’s PICU. Starting on a ventilator, then going to BIPAP, and eventually to a trach which was still connected to a ventilator to help assist him with breathing. He was getting too weak to do it on his own.
August 23, 2008 was the day I found out I was pregnant to James. August 23, 2010 was the day we found out his heart wasn’t working anymore. None of the valves in his heart were closing correctly anymore, blood was just regurgitating back and forth. This was it…
We waited until September 18, 2010 to take him off of life support. There were a few reasons we waited that long. Mostly because his brother’s birthday is September 6 and we didn’t want Joseph to ever feel like the celebration of his birth was overshadowed by his brother’s death. We also had a lot of family and friends that wanted to be there. At the same time we knew that even with the trach/ventilator, James could still die before we took him off of life support. We knew it was all in God’s hands.
The day we took James off life support we let all family and friends who wanted to, come say their goodbyes and hold him one last time. One by one everybody filed out of the room, first kissing him, whispering in his ear and then hugging Joe and I. Once everybody left, Joe and I climbed in the bed and the nurse laid James in our arms. We held him, kissed him and said our own goodbyes. Then they took of the ventilator.
No words would ever be able to describe those last moments. It was almost peaceful. I just held my hand on his chest and kept kissing his beautiful lips. I FELT him take his last breath and moments later, I FELT the last beat of his tired heart. He was gone…
Not a day goes by that I don’t miss him. Not one special occasion goes by that I don’t feel the weight of his absence. There’s a part of my heart that’s missing and I won’t be whole again until I see James in Heaven.
I still question whether or not we did things “right.” Did we use the right doctors? Hospital? Treatments? But I DO know that we did our best and NOBODY could love James more than we do. My hope in my heart is that James always felt that love while he was here. That he was as happy as he could have been in his short, beautiful life. That he is now at peace. That he knows how much we miss him and that someday we will be together again.