tgr4life's Blog

Sorry I havent been around much.
And this is a little long.  I am sorry.  But I need some help to make a little noise. 
Gwyn isnt getting better.  The tumor has now proven to be agressive.
Some of this many of you know- some of this, you dont.  So forgive me for a moment.
The Fort Wayne Police Department and the Fort Wayne Fire Department have teamed up to do a benefit hockey game for my four year old daughter Gwyneth.  She has a condition called Neurofibromitosis type 1.  Anywhere there is a nerve in her body she can grow a tumor. Heart problems, disfigurement, bone deformities, severe pain, learning disorders, blindness, and death- are all daily realities.  Right now she has seven external tumors on her skin and one on her optic nerves in the center of her brain.  It has already robbed her of the vision in her left eye and taken about 60% of her right.  She has been undergoing chemotherapy for the last year and still has months to go for the cycle she is on.  But the sobering reality is that she isnt getting better.  And that she is likely to be undergoing chemotherapy for years like this- through high school.  Possibly for the rest of her life.
    It is a debate of quality of life vs quantity of life.  We cannot surgically remove the tumor without removing her optic nerves, causing her to go blind and also causing perhaps severe brain damage.  We cannot treat it with radiation as the doctors said due to her condition, it would certainly cause many more and probably worse cancerous tumors in the surrounding areas of her brain.  Another place I cannot go.  So that leaves chemo therapy- which is obviously a poison that damages the tumor, but all of Gwyn as well, and takes years off her life.  Especially when considering we are talking a decade plus of chemotherapy.
Because the tumor has proven to of been aggressive- its likely that instead of being off chemo permenantly in June but likely, just a few months off.  Since chemo is the only option, its the only real measure to save her vision, and her life from the tumor possibly going terminal.
    The Fort Wayne Police heard about Gwyn through an officer we know and they approached us three weeks ago.  They offered to host a hockey game for her benefit this coming Saturday, March 19th at 6pm located at the Canlan Ice Arena next to Glenbrook mall here in Fort Wayne.  In that time we were told about this, we have raised nearly $7,000.00 it items and gifts from local business for raffle and silent auction.  We have been extremely blessed by the community already, but I am having a hard time getting the word out. 
Honestly- it has been virtually impossible.
    I have tried the newspapers, radio, and television stations to little or no avail or even a call back for that matter. 
No one has heard of NF.
It doesnt register with people. 
And I dont want to say that no one cares- because they do.  I know they do because the people that know my little girl have pulled off many small miricles to make this event come together the last few weeks. 
But it isnt news worthy. 
It isnt worth talking about the facts that its more prevelent than cyctic fibrosis, muscular dystrophy, and Huntingtons disease combined.  They get telethons.  We cannot get identified.  1 in every 3,000 births someone is born with NF1.  And I would wager that only 1 in every 3,000 have ever even heard of it.
So I need some help to make some noise guys.  I dont care if you just talk to your friend at the bar about this, spouse before bed, or Jr talking to his sheep.  Just tell someone.
I have to think of more and more creative ways to make ends meet now.  And luckily alot of people are takiing alot of the worry about seeing Gwyn is still able to see her doctors.  And we are blessed.  but there are alot of other people who havent.
So I am starting a network of family, donors ,doctors,  businesses, patients, abd friends. 
I am calling it, "gwyN's Friends", and yes- it did take me awhile before I realized the "NF" in gwyN/s Friends". LOL!  But it works.  And i am making this network to help other unknown kids like Gwyn, the way alot of you guys have over this last couple of years.  But I need some help- alot of help.  And I am hoping you might lend a hand.
Yesterday I only had an application for a tax free TIN to have a non-profit.  By that evening I had a lawyer, an accountant, and now I am working on a network.
Please send this to someone that might be interested.  Throw it on facebook.  Twitter...  Anything you think you might have the five minutes it might take to send this to someone else.
If you are interested in helping, you can email me, call me, or just leave my daughter a kind word on her website...
Philip Taylor

Thanks for taking the time to read this guys.  That alone at least means there are more people that understand this a little more.  And if you have the time- tell someone else about it if you can.
Hope to talk to you all again soon.
Phil (AFact)

March 17, 2011  12:22 AM ET

It's not sports related... so sorry for the confusion if you stumble across this by accident- but if you read this then that's all I care about.

March 17, 2011  12:29 AM ET

I must admit that I had never heard of it before "meeting" you, Fact. I will make sure that a lot more people in the greater Pasadena area have heard of it. Sending my best wishes to you and yours.

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