Tuesday, April 3, 2012

Life Gone...But Not Forgotten!

She was so excited about planning her families Make-A-Wish to Disney World in just a couple of weeks!  "We'll look for Bailey's star!" she told me.

We had become pretty close friends over the past year...Neurofibromatosis, the string that connected us.  I am not sure if NF is what took my friend....Or possibly the complications that can obviously arise from it...But I miss her.

Her death hit me hard.  Harder than I thought any death of a friend could.  Maybe because it hit so close to home.  (An NF mother, MY age...who was losing weight and trying to become healthier) Or maybe it's just that I don't think death is very fair sometimes.  I mean in all honesty...NO ONE deserves to die....But the person in particular left this Earth WAY too soon. (In MY opinion)

Kambi, your kind words that you spoke to me, just the day before you left this Earth are captured in my heart forever.

For some reason, I thought this blog post would be longer....Like I had so much more to say....But I just can't seem to get the words out.

You are missed Kambi.

Thrive On!


  1. I was born with nf and i would like to talk to ppl that have it also and now that i have found this blog i hope to make some new friends . i thought that i was a lone and never knew that there were more ppl out there with nf and i am now 31. and i realize that i have been like this my whole life i still never let it stop me. i lost my left leg below the knee due to nf when i was 4 years old. i am so proud of all those that have also made it through the struggles of nf. i know how hard it can be. if u would like to get to know me . please add me on facebook. charityannwing@yahoo.com

  2. The words will come when they are ready, Kristi. Take care. <3

  3. Christine TrioliApril 3, 2012 at 8:32 PM

    That was so beautiful! God Bless! I am here for you!
    Thriving with NF1 and an awsome son with NF1 too!

  4. Christine TrioliApril 3, 2012 at 8:46 PM

    That was beautiful love the site you have crated!
    God Bless Kambi!
    I am here for you!
    Thriving NF1 and a son w/ NF1,

  5. I do mean to be nosy but did she die of a neurosarcoma a plexiform gone bad? My dad died of lung cancer but had nf at age 63 seven years short of life expectancy. It is sad this women died In what looks like her late 30's or early 40's. I just hope the plexi on my face never goes crazy. Any way sorry for your loss.

    1. WFORD... Suspicion says this was a sudden annuerism. Unsure if this was even related to NF at all.