neurofibromatosis cafe

A place to talk about NF, have fun and share.

Please send positive energy to wee lou!

I was talking with wee lou (Louise Cunningham from Scotland) the other day when she hit me with a bombshell…the operation she is having on Friday, July 25 is a little more involved than she first let on.

In fact, it’s downright dangerous.

She will be getting a tumor removed from her brain stem which will result in some pretty horrific side effects. I’ll let her telll you in her own words. (She gave me permission to share the email she sent me.)

“I haven’t explained everything about this op. The outcome will change me. Yes i will exist but i wont be louise like everyone knows and have grown to like i will be completely dependant i wont be able to walk, talk, eat or do all the things ppl take for granted. Today my mum asked do i still want to go through with this as supposedly i have to think about my self not what every1 wants.

i will be fed by a tube coming out from my stomach, ive had it before its vile but i had it through my nose as this was temporary then. ive known about 3 to 4 months im not sure of my emotions of it.

Yes iv had a few opinions yes but unfortunately they all said the same. I wont be paralysed but such a sitting in a chair i will easily fall as the first op i had when i was 16 took away my balance

which i have learnt to control but this time my balance will go completely. If i dnt go for it loads i will have a couple of years left and unstoppable headache’s. I usually just go with wats my friends and family but a few have realised it will take its toll on me.”

Wee Lou is going through an incredibly tough time right now and she needs our love and support more than ever before. If you could take a moment to post a message to her on this blog or on the live chat or via an email, I know it will be very much appreciated.

Her email is


July 11, 2008 - Posted by | neurofibromatosis


  1. silly billy its actually two weeks from now the 25th july 08

    Comment by Louise aka wee_lou_c | July 11, 2008 | Reply

  2. Thanks, wee lou, I just changed it. I think I’m dyslexic.

    Comment by - the blogger formerly known as Lou | July 11, 2008 | Reply

  3. dont be silly Lou im very appreciated of what you have done.

    Comment by Louise aka wee_lou_c | July 11, 2008 | Reply

  4. hey wee lou i will be thinking about you and praying for you through this and also to let you know i am here to talk to anytime i will be praying 110% for you and hope the best for you just remember you are loved and cared about by all of us here we are here and pulling for you sweety be tough and hang in there

    Comment by Brian | July 11, 2008 | Reply

  5. Wee_lou

    thank you for your many visits to the blog and the live chat. You are who I would call a true friend, and I pray that you will come through your health issues in a good way. You have a lot of friends here that love you and support you. Keep in contact.

    Your Friend

    Comment by Reggie Bibbs | July 11, 2008 | Reply

  6. Give our best to your mum, wee lou. She can always visit us on the blog or chat if she ever wants to talk.

    Comment by - the blogger formerly known as Lou | July 11, 2008 | Reply

  7. Matthew Bernier wrote:

    hey Reggie i just heard about the op that wee_lou is going to have and i wrote this prayer for her and i wanted you to read it. Dear god i pray that wee_lou will have a safe and successful surgery on the 25 guider the surgeons hand as he removes the tumor on the back of her brain and please give her a speedy recovery after the surgery i know that i haven’t prayed in a long time but this is weighing on my heart so please god she is a child of yours and i know that if its your will heal her from this tumor of hers in your name i pray amen

    Comment by Reggie Bibbs | July 11, 2008 | Reply


    Comment by Brian | July 12, 2008 | Reply

  9. hey thank you so much guy i can put in words how much i appreciate you all

    Comment by Louise aka wee_lou_c | July 12, 2008 | Reply

  10. Being part of the NF groups, for 21 years, I thought I heard almost everything possible with NF, then one comes along and I learn some thing new. This really top it off. I just can not image what this is will be like. I do not think I will be able to handle this if this would be me, and sometimes I complain on what I have. I feel ashame of it knowing that there are others who are worse off than I am. I will have to put you on my prayer list and may enlist my bible study group as well. I appreciate you coming in this room to share and listen and hope you will continue to do so.

    Comment by John(jptex | July 12, 2008 | Reply

  11. thank you jp thats very sweet of you

    Comment by Louise aka wee_lou_c | July 13, 2008 | Reply

  12. To those of you who have not had the honor and pleasure of communicating with Louise (wee lou) I heartily recommend that you do. Although her life has been incredibly altered by the effects of NF, you would never know it by her fun, cheerful, upbeat emails and chats on the Just Ask! Live Chat! She is an inspiration to us all, much like Reggie is.

    Comment by - the blogger formerly known as Lou | July 13, 2008 | Reply

  13. thanks Lou im jst wee me nothing special really lol

    Comment by Louise aka wee_lou_c | July 13, 2008 | Reply

  14. well said Lou i strongly agree it would not be the same with out wee lou she is really great i am glad she found the site and has come aboard to have fun with all of us she is truely a strong and great person to have here just like the rest of us

    Comment by Brian | July 13, 2008 | Reply

  15. Oh my goodness, my prayers are with you. You are such a strong person to be able to go through all of this. My husband is also having surgery on the 25th so I will already be holding the rosary that day and I will make sure to say an extra prayer for you.

    Comment by Emily | July 21, 2008 | Reply

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