Damian's Rough Start with a New Heart

Damian is only 18 and is supposed to be starting a new life after his heart transplant. But, instead, he has been battling a rare condition that has completely paralyzed him. It's unbearable to see him forced to try so hard to move, unable to speak or communicate. We rejoiced when we found out a heart was available, envisioning his new life, a healthy heart in his chest for the first time. It's crushing to witness this illness rob him of his function and quality of life. Damian calls me Bonus Mom and in the 2 short years he's been in my life, he's made an enormous impact on me. I'm grateful that my relationship with Ron has brought me Damian as well. I'm a proud Bonus Mom.

Ron travels back and forth between Omaha and Chicago so he can continue to work, while Shari (Damian's mom) lives in Chicago with Damian full time, 11 hours from their home in Fargo. The hospital stay will be months longer than anticipated, with this new obstacle, and Shari is in need of more financial support. I'm hoping we can all help. All donations will go directly to Shari.

This is Shari's account of Damian's story:

After 18 years of battling a congenital heart defect, including four long years in continuous heart failure, Damian received the gift of a donated heart on Oct. 13, 2022. His transplant was done at Lurie’s Children’s Hospital in Chicago. It was his fifth open-heart surgery, eight years after the most recent operation that was so hard on his body the doctors realized he could only handle one more – and it had to be a transplant.

His new heart beats strong in his chest, but other complications arose. Damian is suffering from what doctors think is critical illness neuromyopathy, causing complete paralysis. It’s absolutely devastating to see him struggle with this instead of recovering from his surgery and starting a healthy life.

The transplant had gone well and the doctors expected him to begin waking up four days after surgery. They were concerned when, eight days after surgery, Damian still hadn’t opened his eyes. On day nine, we realized he was awake, but couldn’t move. He finally opened his eyes and we could see the terror in them. Ontop of that, infections started popping up; blood pressure issues followed; air pressure built up around his lungs. For the first time in his life of prolonged hospital stays, two code blues were called for him. And, if all that wasn’t enough, an MRI showed he had suffered a left-side stroke at some point after his transplant. It’s not the cause of his paralysis. It’s an added hurdle to his recovery.

The doctors can’t tell us what caused his critical illness neuromyopathy. We may never know. Damian is starting to make progress, but the prognosis is months or even years of intense physical therapy to return his mobility to near normal, which is our goal. He can nod his head and has enough mobility to push a communication-aid button with his left hand. Weeks have gone by while he fights this confounding condition and doctors around the world are stumped.

I’m by his side every day and his dad travels back and forth from Omaha to Chicago to be with him, between trying to get hours in at work to help me financially. We are Damian's voice, his advocates and his emotional support. To stay with him continuously, I am in need of financial support. I humbly thank you for any support you can provide. Know that Damian is grateful, too.

He will continue to fight as hard as he can to get the life he envisioned with his new heart. Damian is a champion at overcoming obstacles thrown his way in life. He will overcome this one, too.