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World Vision Trip To Rwanda

Hey Everyone! I'm just your average gal, living in Virginia Beach with my precious 11-year-old dog, Zoey (who acts way more like a puppy than a 11-year-old dog.) I love it here, aminvolved with a wonderful church where I'm on the Music Team, help teach Sunday school andam involved with our Singles Ministry. I also love getting involved in missions work andhave been numerous times to Nicaragua since 2003 to help at the Casa Bernabe orphanage inMasaya (about 14km outside of Managua) and sometime soon I plan on making my first trip toUkraine to help at orphanages in Odessa. I am very passionate about helping those in need,especially kids.
I also have a genetic disease called Neurofibromatosis (NF for short) which is a geneticdisease that can cause tumors anywhere and everywhere in and on the body, including nerveendings, brain, bones, spinal cord, organs, literally anywhere. Type 1 NF (which is what Ihave) affects one in every 3,000 or so people and Type 2 affects about 1 in every 25,000people (although these statistics may actually be higher) making it the most commonneurological disease, which almost no one has ever heard of, unless you either have it orknow someone who has it. People with NF face a whole range of problems from the disease:multiple tumors (some of which can become cancerous), blindness, deafness, loss of limbs,paralysis, brain tumors, learning and developmental disabilities, bone deformaties,scoliosis, increased risk of the tumors turning cancerous, increased risk of stroke. Andthose are the physical problems that someone may or may not face (NF is unpredictable andtwo people who have NF may have VERY different manifestations of the disease.) We alsocarry a very heavey emotional and psyhcological weight. We have the fear of not knowing ifwe are going to wake up tomorrow with more tumors (or in the case of my friend Jess, anawesome 12-year-old with NF, waking up not being able to see anymore), we have no way ofpredicting what is going to happen with our case of NF. Then there are the stares andremarks from others, somce of which can be incredibly cruel and hurtful, especially whenyou're a child. This practically destroyed my self-esteem throughout grade school andmiddle school when I was known as "Elephant Girl" since at the time it was still thoughtthat the Elephant Man had NF.) We live with the fear of losing our health insurance (or notbeing able to get any in the first place.) We live with the potential of having multiplesurgeries througout our lives. I have only had 4 so far but have friends even younger thanme who have had literally HUNDREDS of surgeries. That's pretty much all we can do, sincethere is no cure. We can just remove the tumors and pray they don't come back. We would love all the help we can get in spreading the word about NF, so here's how you canhelp: 1. please check out these resources: http://www.nfinc.og (NF, Inc) http://www.ctf.org (Children's Tumor Foundation) 2. Repost blogs and bulletins about NF to your MySpace friends 3. Join a MySpace Cause All of these you can do without having to even donate financially, although if you want todo so too, that would rock!
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