Roran



was born on May 22 and was diagnosed as having lymphatic malformations. This is a rare condition in which the lymphatic system is thought to not develop properly and results in a series of large and small fluid filled cysts. These cysts are non-cancerous and are most commonly found on the head and neck. The cysts generally continue to grow with the child unless they respond to treatment measures. In Roran's case, his lymphatic malformations are on his neck and surrounding his trachea. This creates difficulty breathing. He received a breathing tube at birth and a few hours later, it was decided that he needed a tracheostomy in order to secure his airway. He spent the first week of his life under paralytic drugs recovering from this procedure. He is currently undergoing treatment in the form of a drug called Sirolimus, which will hopefully stop the growth of the cysts. He remains in the Intensive Care Nursery until he has stabilized and seen a decrease in the cysts. The problem is they can swell if he gets sick or in response to certain stressors in the body. This starts us back at step one again. I (mom) am here in San Francisco with him while the rest of the family is going about life in Reno. We are hopeful that one day we will all be in the same place again and relearn family life with the new challenges of taking care of Roran's medical needs.