| My name is Annysa Ginsberg. Here I am, next to Christopher Creek at Kohl’s Ranch near Payson, Arizona, on vacation with my family. I am having a great time despite this dreadful disorder I was born with called Neurofibromatosis (NF). We will get back to that in a moment! My mom’s name is Laurinda and my dad’s name is Dave. I have two big brothers named Anthony and Andrew and a German Shepherd dog named Beya. I am a happy seven-year-old girl in first grade. I love school. This year I am learning my addition and subtraction. My favorite part of the day is art, music and, of course, playing with my friends on the playground. I am also taking piano lessons and enjoying it. Learning the piano is very challenging but very rewarding. I love playing at piano recitals. I was born September 27, 2002 in Tucson, Arizona. February 5, 2003, five months after I was born, I was diagnosed with NF1. Wow, what is NF1????. The doctors told my mommy and daddy that Neurofibromatosis (NF) is a common neurological disorder that can cause tumors to grow anywhere in or on the body. NF is manifested by cafe'-au-lait spots, neurofibromas, and several other diagnostic criteria. NF can result in blindness, deafness, bone deformities, loss of limb, scoliosis, and learning disabilities. Even though many people have never heard of NF, it is more prevalent than cystic fibrosis, hereditary muscular dystrophy, Huntington's disease, and Tay Sachs combined. My mommy and daddy learned through all of their questions that Neurofibromatosis strikes one in every 3000 to 4000 births. It is either hereditary or a spontaneous gene mutation during pregnancy. In my case, it was a spontaneous gene mutation, since no one in my family has this condition. They also learned that 25 percent of those diagnosed with NF might develop further complications. I am sad to say that I fall into that 25 percentile. Since my diagnosis, I have undergone MRI’s, clinical eye exams and neurology appointments every six months until the age of six. I have developed optic gliomas on both of my optic nerves. I have also developed small tumors on my brain stem. About three years ago the tumor on my left optic nerve started growing and getting bigger. The doctors thought they would have to operate or do chemotherapy to shrink the tumor. Since then, the last 2 MRI’s have shown that they have stabilized. The vision in my left eye has gone from 20/200 in October 2007, to 20/50, in October 2008. The vision in my right eye has gone from 20/25 in April 2008, to 20/20 in October 2008. Things aren’t so blurry anymore. In fact, my last MRI showed that the optic tumors are shrinking. When I was younger, I also developed a moderate delay in my speech and cognitive development. While I was in pre-school, I received Special Education, where I received speech and cognitive therapy. Since then, I have improved a lot. I still receive speech therapy in first grade. In 2007, my mommy and daddy ran a half-marathon to raise money for The Children’s Tumor Foundation. In 2010, they hope to raise money through Racing4Research to help ensure a brighter future for all with NF. My family and I are committed to helping others who also suffer from this challenging disorder. You can call my mommy and daddy at 520-419-6642 if you have any questions. Please join us so hopefully one day they will find a cure for me. Your donations to help our cause raise money for research are extremely appreciated. Every dollar counts. It could be your dollar that finds that cure! Please visit www.CTF.org for more information about Neurofibromatosis. |
