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We discovered that NF is a genetic disorder of the peripheral nervous system that causes tumors to grow on the nerves anywhere in the body at any time. The disorder is progressive where disease manifests itself over time. Affecting more than 100,000, it is one of the most common genetic disorders in the United States, affecting one in every 3,000 births and affects people of all genders, races, regions, states, etc. equally across the globe. The disease is more common that Cystic Fibrosis (CF), hereditary Muscular Dystrophy, Huntington's Disease, and Tay Sachs disease combined, and yet there is no known cure. This was ultimately the most devastating news of all and we cried many tears. The prognosis for Isabelle is unknown as the disease is a progressive disease and the disease itself affects all individuals differently so we will never be in the clear nor will we ever be able to say that the disease will not affect her. She may grow tumors, she may not. She may have a number of problems including disfigurement, bone deformities, scoliosis, visual impairments or blindness, brain and spinal tumors as well as learning and developmental disabilities, and she may not. Right now, our Isabelle has a tumor on her right optic nerve that we must monitor over the next several years through MRI scans every three months. The optic nerve controls the signals that flow between the brain and eye allowing her to see. If the tumor is found to affect her vision or grows aggressively, Isabelle will need to have Chemotherapy. On December 28, 2010, Isabelle had a plexiform neurofibroma (pnf) on the back of her head removed (a different type of tumor), which was growing aggressively. Unfortunately, there were parts of the pnf that could not be reached without a sugery that would have been extensive for a two year old. As the disorder is progressive and unpredictable, we just don't know from day to day, and year to year, what Isabelle will be faced with in the future. Isabelle is vibrant and full of life, and is really developing into a wonderful child. She is meeting all of her growth milestones. We soon realized the biggest problem was that although we were armed with all the knowledge and facts we could find out about NF, we were left feeling completely helpless, but we could do something. We decided as a family that we needed to get actively involved in finding a cure for NF by raising awareness and drive funding for research. Shortly after being introduced to CTF.org we discovered a great way to get our friends and family together while raising money and awareness. Upcoming Delaware event: Isabelle's third annual Tea Party on August 6th, 2011 from 11-2. To be involved contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . The money raised through Isabelle's Tea Party will help fill the funding gas tank for researchers and create awareness that is crucial to fighting this crippling disorder. At Isabelle's Tea Party, we hope that you will join us, meet some amazing people, learn about NF through a video presentation and question and answer session, and unify our friends and family in our universal goal - raise money to find a cure for NF and find a cure for our Isabelle. |
We have two beautiful children, Tristan (5) and Isabelle (3). About 6 months after Isabelle was born, we discovered that she was born with the most common neurological disorder affecting a single gene called: neurofibromatosis Type 1 (NF1). A few thoughts came to mind; If it is so common, why have I not heard of it? "Okay, What is NF?" and of course "What will happen to Isabelle?" How can we get rid of it? Why did this happen to us? We did some research and found that NF affects people in many different ways.
