Great Steps for NF - TN

NEUROFIBROMATOSIS INC

Great Steps for NF - TN

Memphis, Tennessee
Training buddies Whole Family!

Great Steps for NF - TN

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We will be walking in Memphis as a family!

Savannah's Story:

Savannah was diagnosed with NF1 shortly after birth.  Her mom, Dana, had NF1 so the cafe au lait spots were enough for a diagnosis.  Savannah is now 7 years old and a second grader at Knoxville Christian School in Knoxville, TN.  She is very bright, but does struggle at times due to Attention Deficit Hyperactivity Disorder.  In April of 2011, Savannah had a "routine" MRI.  The MRI revealed a lump on her brainstem and cervical spine.  She went to St Jude for an evaluation.  At this time they are not 100% sure what the mass is or what it will mean for Savannah's future.  She is to return to St Jude every three months for repeat MRIs to monitor the brain mass. Savannah rarely lets her condition get her down.  She is a happy girl whose motto is "Everyone needs a hug, so I am going to hug everybody!"

Caroline's Story:

Caroline was only recently diagnosed with NF1.  She is two years old and has only now developed the cafe au lait spots.   She has exhibited significant developmental delays  is currently in speech, occupational, and physical therapy.  One of the major delays is language, she can understand everything you say and follow commands, yet she has very few understandable spoken words.  Everyone who meets her comments on how pretty, sweet and well behaved she is.  I do not think anyone could meet her and not love her instantly.  She is scheduled to have an MRI soon. 

Savannah and Caroline also have a four year old brother named Ian.  He does not have NF.  However, due to his mother and sisters having the disorder, he has to live with it as well.  He is too young to understand what it means, but I know in the future he will want to fight for a cure as well. 

I (Dana) have NF1 myself.  I am one of the lucky ones, in that it has not affected me as much as others. I had often thought about fund-raising activities, but it took my daughters being affected to light the fire under me.   It is for them I do this.  I also do it for all others who have NF including my family members who are affected.  I also walk in memory of my mom who passed away from GIST cancer in 2009.  

Currently there is no cure for NF1.  It is a progressive and unpredictable disorder.  There is no way to tell what path the disorder will take, and sadly sometimes the path is fatal.  There is research being done to find a cure, but it requires funding.  That is what this walk is all about - finding a cure for this horrible disoder. 

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