BENEFITING: Transverse Myelitis Association
EVENT DATE: Oct 06, 2013
BENEFITING: The Transverse Myelitis Association
My name is Victoria, I’m 24 and I was diagnosed with Neuromyelitis Optica (NMO/Devic’s Disease) in January, 2012. A year and half earlier I experienced sharp and painful sensitivity in my thighs. The doctors did not know the cause of it and after a month it simply passed on its own. However, as that oddity passed, another began. Embarrassing uncomfortable belching, hiccups, nausea and vomiting plagued me for nearly 3 months…and again…the doctors were stumped. I continued my schooling, internships and my happy college life! A few lingering leg pains and upset stomach here and there but all in all, I considered myself better. Then in the Fall of 2011 I had a little headache which evolved into a big headache, which eventually felt like an unstoppable and never ending pressure behind my right eye…Wow I thought, I didn’t know “migraines” could block vision - this is what 22 year old me self-diagnosed. Okay, this is getting weird; I’m literally going blind here! Time to involve the doctors and so what amounted to about a millions blood draws and 50 guess and checks later I was completely blind in my right eye and of course the doctors were still stumped. Happy New Year 2012! Alright doctors, lay off, I’m going back to school…so I thought. Then both good news and bad news came in. Hey one of those one in a million rare disease tests came back and you have NMO. Yay! It has a name and reason behind the madness, great let’s move on! “Sigh” I was told to come home, miss three weeks of school and I received a treatment that works for some but did not work for me. Can I just go back to school now? Thanks…So I am currently going on 2 years of living half blind and receiving a chemo treatment for my chronic illness. The treatment is simply meant to prevent further blindness or paralysis and my vision is not expected to return to my right eye. It’s been crazy as you can imagine but I hope that you can also see that I have a good attitude about this all! I won the lottery! One in a million and am just pushing on like everyone else in the world. So run, walk, roll for me and my NMO, ADEM, TM brothers and sisters. Let’s raise some dollars and see what science can provide for us all. Look for me…I will be the one painting faces
The goal of the Illinois Walk-Run-N-Roll Campaign is to increase awareness and raise funds for research and programs for individuals suffering from Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica (NMO), Optic Neuritis (ON), Transverse Myelitis (TM) and Recurrent Transverse Myelitis, and their caregivers.
The first annual Illinois Walk-Run-N-Roll for the Transverse Myelitis Association (TMA) will begin with Registration from 10 to 11 a.m., followed by the Walk-Run-N-Roll and a Post-Walk Celebration. It will be held at beautiful McCollum Park, 6801 South Main Street, Downers Grove, IL. Proceeds will benefit TMA's research and service programs for people with TM, NMO, ON and ADEM.
We have reserved the large Picnic Pavilion which is adjacent to a 1.2 Mile Paved Path and a Playground with ADA- and CPSC-compliant play equipment. Major highways, including I-355, I-55, I-294 and I-88, are nearby.