Nicholas' story begins in 2001. He was born with hypoplastic left ventricle. In English that means the left ventricle of his heart never developed. His first open heart surgery was when he was only 8 days old. His parents were told that eventually he would need a heart transplant.
Over the course of the next 7 years he had 6 open heart surgeries. For the next 5 years Nick lived a somewhat normal life. He was monitored by his cardiologist. When he was 12 he started getting sick. He had migraines, stomach issues and his abdomen began to swell due to a condition called PLE Protein losing Enteropathy. After 6 months of tests and adjusting medications it was determined that Nicks liver was sick and would not get any better with his sick heart. In May of 2015 Nicholas was admitted to Lurie Children’s Hospital to begin the evaluation for heart and possibly Liver transplant.
During the evaluation 3 things were discovered.
1. Nick's heart was failing and he needed a new one
2. Nicks Liver was not failing. It was just sick and would heal after he received a heart
3. Nick had a tumor on his spine at T5. It would need to be removed, but Nick was not stable enough to have the surgery until after he received the heart.
On May 18, 2015 Nicholas was placed on the transplant list level 1A and was told he had to remain in the hospital until he got his heart. In June Nick started to develop weakness in his legs which doctors attributed to the tumor, over the 4th of July weekend Nick fell down and was unable to get back up. He could not move his legs. On August 3, 77 days after being placed on the transplant list Nicholas received his new heart!
Nicks road to recovery took several months, because he had become so severely deconditioned, he was admitted to a rehab hospital to help him build his strength. Within 2 months his liver started healing. On November 11 Nick had the surgery to remove the tumor. The doctors were not optimistic as to if he would ever walk again. That night Nicholas wiggled his toes. Something so small gave his family so much hope. 6 months later after a lot of hard work Nicholas was able to walk for his 8th grade graduation!
How can I help? You may ask. Nicks story is far from over. The financial burden his parents have endured from 7 months living in the hospital, and countless outpatient visits has taken its toll. And the burden will continue on. Nicholas will be on anti-rejection and immunosuppressants for the rest of his life. He will need a biopsy of his heart at least once a year for the rest of his life as well. If Nick gets sick he will need to be monitored closely and most likely need to be hospitalized. He is under the care of several specialists, who are still treating the complications from before and after transplant. He developed scoliosis as a result of his PLE and now wears an orthotic to help keep his spine form any more curvature. Which will need to be replaced as he continues to grow. And eventually he will need another heart transplant. This is where you can help.
Nick and his family have many things to be thankful for. At the top of the list is the grieving family that gave Nick the gift of life. The incredible nurses, doctors, surgeons, and therapists who kept him alive, healthy and helped him get stronger. Their family and friends who stood by their side. And you, for your help