Donate if you can... or share this with everyone you know

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Member since 8/08

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stacey

Donate if you can... or share this with everyone you know

My son is diagnosed with Neurofibromatosis. It is a disorder that causes tumors to grow throughout his body. Currently, he is suffering from one called a plexiforma, a large group of tumors, that are developing around his side and abdomen. I am running in this crazy race to raise money for NF research... to help find a cure so kids like him can live a normal life. If you can donate I would appreciate it greatly... and please share this link and his story with everyone you know!

THANKS!

Cupids Undie Run

Posted 2/10/14 10:16 PM

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PrincessP
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Member since 12/05

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Re: Donate if you can... or share this with everyone you know

Posted by staceyd

My son is diagnosed with Neurofibromatosis. It is a disorder that causes tumors to grow throughout his body. Currently, he is suffering from one called a plexiforma, a large group of tumors, that are developing around his side and abdomen. I am running in this crazy race to raise money for NF research... to help find a cure so kids like him can live a normal life. If you can donate I would appreciate it greatly... and please share this link and his story with everyone you know!

THANKS!

Cupids Undie Run

I am curious. When these rumors form, he needs chemo to shrink or surgery to remove or both? Forgive me as I never heard.

Posted 2/10/14 10:20 PM

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staceyd
LIF Adult

Member since 8/08

2052 total posts

Name:
stacey

Re: Donate if you can... or share this with everyone you know

Hi! As of now he does not need chemo.. It depends on where the tumors grow.. They grow on nerves so if it's an optic nerve tumor it is treated with chemo to shrink it.. The ones he has now are not symptomatic but would require removal or what they call "de bulking" if they get too large or start to impede his development or cause him pain.. The disorder is a sit and wait type thing.. He has routine MRIs to track tumor growth but no way of predicting what will happen next..

Posted 2/10/14 10:34 PM

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PrincessP
Big sister!!!!!!!!!!

Member since 12/05

17450 total posts

Name:

Re: Donate if you can... or share this with everyone you know

Posted by staceyd

Hi! As of now he does not need chemo.. It depends on where the tumors grow.. They grow on nerves so if it's an optic nerve tumor it is treated with chemo to shrink it.. The ones he has now are not symptomatic but would require removal or what they call "de bulking" if they get too large or start to impede his development or cause him pain.. The disorder is a sit and wait type thing.. He has routine MRIs to track tumor growth but no way of predicting what will happen next..

hope you reach your goal. God bless him!!! Chat Icon