It’s late in the day and I have most of my Mommy duties handled. Mica is napping and JT is watching TV as I feed my internet addiction. Not that I need another reason to be online but I have an interesting and important story to share, and with the help of one of my BFF’s have come up with the idea of blogging it! Isn’t this what all the hip mommies do now? Blog about their daily battles with random childhood issues. I hate to disappoint you all but this wont be that type of blog!
My entire purpose for beginning this blog is to track my daily journey as a young, Latina, late-deafened mother who was born with NF2. Nf2 is short for Neurofibromatosis Type II, a chromosomal disorder affecting 1 in 40,000 people. It causes tumors to grow anywhere in the body, but always on the nerve bundle controlling hearing, balance, and facial strength. I inherited the disease from my Mother, her and her brother inherited it from my Grandmother. Eventually I was diagnosed as a baby, and my own son JT was diagnosed at a very young age as well. Having NF2 means a shortened lifetime filled with MRIs, surgery, radiation, fear… and hope. Always hope.
I have made a commitment to raise money for the Children’s Tumor Foundation. CTF is dedicated to ending all forms of neurofibromatosis through research. There are other variants of the disease but I will be focusing on my own battle with NF2. You can always visit http://www.ctf.org/ for more precise information about the foundation.
CTF raises money in many ways, one way is the NF Endurance Team, a running team that participates in marathons all over the country building recognition and funds for CTF. I set my first goal this year to run the half-marathon (13.1 miles) on October 12, 2008 at the Long Beach International Citibank Marathon! My fundraising goal was originally $2,500. By email blasts alone I have raised almost the entire amount, and am now looking to raise as much as I can in the coming weeks while training to run safely and without injury. I am 11 weeks away and have been running and working out in preparation for months. As of this week I am buckling down into a strict training program.
Come back for daily updates! Each day I plan to share another piece of my NF2 history as well as my daily training report! Bookmark me and feel free to leave comments with questions or motivational words!
As always, Never Give Up Hope!
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8 comments:
well written. don't forget to add pics as you can!
You spelled Neurofibromatosis wrong, bt you still rok!
You go girl, I'm rooting for you all the way. I know you can do it.
Why don't you just pull out the red pen Dad! LOL ok I fixed it thank you!
great idea Olivia!! the blog rocks!!
Welcome to the world of blogging! Love your layout and you're off to a great start!
I just read about you over on another blog, Womb at the Inn(sane).
I have NF1. But I didn't start getting the tumors until I was in my mid 20s. Mine was a genetic mutation. I had all the cafe au lait spots as a kid, but none of the tumors.
You rock doing what you do!
Here's to there one day being a cure for NF2 and NF1.
Wow, your training is SO much more difficult than mine. My hat is off to you.
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