Luke Robet Cinciala was diagnosed with Adams Oliver Syndrome March 2017. He was born November 2 2016 at 37 weeks gestation. He was born at 3lbs 14 inches. He was in the NICU for 19 days just to grow. He never needed oxygen or anything to help him through. He had molted skin, and on both feet had missing toes with all bones there though. He had enlarged veins on the top of his scalp. Luke thrived and did amazing. He loved to eat. We were seen November 22 2016 at the University of Michigan by a pediatric Dermatologist and that was the fist time we have ever heard of Adams Oliver Syndrome, she had referred us to the cardiology department. We finally got in to see the pediatric cardiologist March 13 2017 and they did an EKG on Luke. They discovered Pulmonary Hypertension with very high levels. Luke was admitted to the hospital. They had him on oxygen. Friday March 17 2017 they did an CT scan and thats when they found out how bad Luke was. His main valves going to his heart were severely dysfunctional. We had a plan to do an open heart surgery on tuesday March 21st but Luke at 4 months old passed away after a very short fight for his life. They are saying Severe Pulmonary Hypertension, stenosis pulmonary vein stenosis and severe right ventricular dysfunction was the cause of his death and that it was all steaming from Adams Oliver syndrome. I pray that they can find more out about this disease. I wish there was so much more they have done for my son. I miss him so much everyday. I pray one day there will be a cure.