My son, Sevi was born on May 24, 2012 with a rare condition called Auriculo-Condylar Syndrome (also can be described as Pierre Robin — although this is not his true diagnosis). Auriculo-Condular syndrome includes a variety of health issues, such as a small set back jaw, breathing issues, feeding issues, a cleft palate, low muscle tone, hearing issues, and deformed ears. He has endured a lot in his life so far. When he was born, he was sent to a different hospital away from me by ambulance because his breathing suddenly dropped and he was turning blue. He had to stay at the Women’s and Children’s Hospital in Columbia, MO for over six weeks. He had his first major surgery, a jaw distraction surgery at three weeks old. Then he had a surgery called Nissan Funduplocation and g-tube placement surgery at six weeks old. He was sent home the day after this surgery with a breathing monitor and and feeding pump. Life was scary having a new baby home after two big surgeries and we struggled at first due to different issues, but were so happy to have him home! Sevi has has physical therapy, occupational therapy, and speech therapy. He is still continuing in speech therapy even up to this day. He has undergone many more surgeries since being sent home too. These include tubes in his ears twice, cleft palate repair, Furlow z-plasty, tag removal on his ears, two jaw distractions, distracter removal surgery, etc. We have been very blessed to go two years surgery free!! We recently got results back from his most recent yearly sleep study and found out Sevi will be having his third jaw distraction surgery on June 9th. This is due to his sleep apnea being so bad. This surgery will mean that he will have FOUR distracter arms (instead of just two like past surgeries). He is going to have to be extra careful this summer and will be very limited on activity (no pool, sports, or even running). Sevi is not looking forward to starting his summer off with a surgery, but we know it will help him out in the long run. To help pay off this surgery and his past (and future) medical bills from various appointments and surgeries, I decided to try out a gofundme page! Please feel free to share, everything helps and does not go unappreciated!