Neurofibromatosis Fighter

What is Neurofibromatosis Type 1?Neurofibromatosis type 1 (NF1) is a rare genetic disorder characterized by the development of multiple noncancerous (benign) tumors of nerves and skin (neurofibromas). What is a neurofibroma? Neurofibromas, the most common tumors in NF, are benign growths which typically develop on or just underneath the surface of the skin but may also occur in deeper areas of the body. The tumors are not contagious. Nodule-like surface tumors are known as dermal neurofibromas. Plexiform neurofibromas grow diffusely under the skin surface or in deeper areas of the body. Hi! My name is Vanessa. I'm the wife of a NF Fighter. His name is Patrick. Pat has been fighting this battle since he was diagnosed at 2 years old. At the time knowledge of NF1 was in its infancy. So when he turned 8 years old and the plexiform neurofibroma started to grow along his jaw his mother was told there was nothing to do. This growth was benign therefor it was deemed cosmetic and too risky of a procedure. It was allowed to grow. In 2015 we were blessed with the news that we had a son on the way and Pat needed to get genetic testing done to see if our son will have NF. With all the advancements today we learned that this large disfiguring neurofibroma can be removed safely and effectively to save his muscle and his jaw. The catch? We have to pay out of pocket. Thankfully all our research lead us to an amazing plastic surgeon that is a specialist within NF. Unfortunately as time has passed we were unable to raise the funds. This allowed the tumor to grow. As of January 2020 the tumor has spread. As of now Patrick has lost most of his bone in his jaw on the left side. The tumor has also grow up and inward and is now taking his hearing by collapsing his ear canal and going after more bone. They also mentioned it has traveled down his neck causing trouble with some vertebrae. These surgeries will hopfully save his hearing and relieve pain. We are here to ask for your support with some of these medical bills.Thank you for your blessings