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A Fact: is alive's Blog Posts

  • 11:56 PM ET  03.16
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Guys-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,…
  • 01:31 PM ET  06.03
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Thank you so much for stopping by!
This is for my daughter Gwyneth (a.k.a. "Gwynie").
Gwyneth was diagnosed with type 1 Neurofibromatosis just a few months ago. As of now, my daughter is only two and a half.
As those of you know that are aware of this disease and its effects- she has an uphill battle ahead of her, for perhaps even the rest of her life. You see, Type 1 Neurofibromatosis causes not just developmental delays in a young child- but it causes nerves in the eyes, spine, and brain to tumorise. She can also develop visible tumors on her skin, bone abnormalities, and heart…
  • 01:22 PM ET  06.01
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Well, thank you all for your well wishes and prayers.  They are greatly appreciated....    Gwyns visit to Riley went pretty well.  Basically they did confirm what we already knew.  She does indeed have Neurofibromatosis I and she does have tumorous "gliomas" on her optic nerves.  That being said, she is quite an amazing child and is doing very well.  Due to the sensitive placement of these tumors we cannot know if they are cancerous or not.  Nor are they in a placement where surgery can be performed with out severe risk to the individual. …

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