Matthew was 7 1/2 weeks premature. He has always had health problems, mostly respiratory illnesses. From age 7 to 11 he had been fairly healthy with no more long stay admissions. In April of 2013 he had contracted strep throat. It was the worse case of it he had ever had. Massive gland swelling, swelling in his throat and eventually leading to a near fatal asthma attack. The pulmonologist decided Matt needed his tonsils and adenoids removed to reduce the amount of strep he was getting. During that surgery the doctor discovered a large bleeding mass above his adenoids. We were sent From Dayton Children’s to Nationwide Children’s to see Dr. Elmaraghy in ENT. That day he preformed a nasal scope on Matt then sent him straight down for an MRI. The mass was a JNA- juvenile nasopharyngeal angiofibroma tumor. This tumor was wrapping around the carotid artery to Matt’s brain, pushing against his brain, pressing against the optic nerve and out to his cheek. We were admitted for a week of scans and procedures prior to the 7 1/2 hour tumor removal surgery. During that week Matt had more imaging for a complete tumor map as well as a tumor embolectomy. They went through his groin up in to the tumor to inject micro coils to try and destroy as much of the blood supply as possible since JNAs are extreme bleeders. The day before his surgery, they took him for an eye exam since they had to go so close to the optic nerve. The resident actually found the genetic markers on Matt’s retina called CHRPEs. He went and got his attending and she confirmed the FAP markers. A few months after Matt’s recovery from the JNA removal, he was seen in genetics and they also confirmed with genetic testing that Matt has FAP. The APC gene mutation that causes FAP causes his body to not be able to regulate cell growth. Which is what caused the JNA. Now we know that FAP is very rare, it means that because there is a family history of thyroid cancer on my side of the family ( FAP comes from his dad) Matt is 166 times more likely to have thyroid cancer. We learned last year he already has growths in his thyroid. At age 11 he had his first colonoscopy and had about 100+ precancerous polyps in his colon. He has to have yearly colonoscopies to check the growth and progress of the polyps. As a 16 year old boy, he is facing the removal of his colon and rectum to avoid full blown colorectal cancer as early as his 20’s. This rare genetic condition is not well known and the research is far behind. we struggle to find doctors that can care for Matt, which is why we are thankful for Nationwide’s GI docs, Dr. Erdman especially.