Bracelets for a NF CURE

The new "" webpage.

Dana Smith

Joined Aug 5 2011
Send a Message
Add as Friend
Flag as Inappropriate
General Info

61 years old
Site Memberships

Bracelets for a NF CURE

Recent Activity
About Me

Hi, my name is Dana Smith and I live in Oxford, Alabama.  I just found your site that you kept a log on your condition.  I couldn't stop reading it till I finished it from beginning to end.  My daughter was diagnosed with NF2 in March, 04., she underwent a 12 1/2 hr. surgery for an acoustic meniginoma on the left side of her brain.  This "monster" left her with complete deafness in her left ear, her left eyelid has a gold chip in it to help her eye close so it doesn't dry out, and she also has a slight sag on the left side of her mouth.   It almost looks like a stroke victim may have or Bells Palsy.  She is so self-consious of this that she rarely allows a photo of her without her having something in front of her mouth, and I hate that because I am so happy that she is still here that a mar on her face is very minor after what all she went through.  I was afraid I was going to lose my baby girl, she is 37 yrs. old, but she will always be my baby girl.  She is married and the mother of a 15 yr. old daughter.  She is needed here to continue to be a wife, mother, sister, daughter and also my best friend.  She still has four of the "monsters" on her brain but they are where they haven't caused any problems as of yet, thank God, and they are still about the same size.  She underwent a Gamma Knife procedure a year ago in April to shrink another small tumor that was growing back where she had the large one removed.  So far it appears to be "dying" as her doctor said, and he is very pleased.  I just want to say, your story of your journey with NF has really touched me, because I now know how my daughter probably felt and feels, but she does not ever show any fear to me, she is the one who consoles me when I worry each time she has an appointment for a check up.  She says you must always stay positive, keep your faith and have faith in your Dr., and she does and adores her Dr., so I must do like she does, but when I am alone, everyone is sleeping, my mind works overtime, because I worry so much that I am going to lose her, that can never happen!  She is suppose to grow old, have grandchildren and take care of her old parents.  If I could ever have one wish it would be that this disease would never have happened to anyone, that it doesn't exist.  At first when she was diagnosed, I thought we were all alone with this horrible disease, nobody I know had ever heard of it, I have had so many unanswered questions, and have worried and fretted so much it has aged me health wise from the stress.  How you all that have NF go on about your lives amazes me and I admire everyone of you.  I am so happy to have found you Andrea, and I would love to get updates from you and any information you get and would like to share.  Thank you for this opportunity to learn more about this NF2 in my daughter's case.  She has also started getting tumors on the palm of her left hand.  Her Dr. suggested several options, but so far she has just decided to let it go on less something else comes of it.  This is enough about me, I am just so grateful to have found your site.  Bless you for doing what you have done.  I too have pictures of Tara after surgery, and she was left with just a tuft of hair, so when she came home I shaved the rest off, and she chose to wear scarves though she did have two wigs.  Her hair grew back a much darker color than what it was prior to surgery and her scar is covered, it has faded over time, but I can still see it in my mind, as well on her head.  Tara is my hero, I love her strength, her positive outlook, and how she doesn't ever complain.  I know I couldn't go that way, I guess I am a big baby, and it amazes me how she knows when I need her to reassure me she is always going to fight this "monster" and never give up.  I have pics of her when she had the Gamma Knife procedure, that was another frightening time in our lives.  Okay, well I hope you want to include me in your fight to find a cure for NF. 

Sincerely,  Dana J. Smith

Post a Comment


Oops, you forgot something.


The words you entered did not match the given text. Please try again.

You must be a member to comment on this page. Sign In or Register