neurofibromatosis cafe

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

Reggie, I need your help!

Reggie,
I have watched with admiration what you are doing for NF, with your website promoting awareness. Our 8-year-old daughter Victoria has one of the more severe cases of NF1, although you wouldn’t know it by looking at her.

She was diagnosed with NF1 at 9 months when our APRN noticed the Café-au-Lait spots. By 2 years of age, Victoria was complaining of headaches and was soon diagnosed with a tumor between her optic nerve and hypothalamus.
Victoria currently has learning disabilities, vision problems, and attention problems and with the development of a second growing tumor in her basal ganglia she is now experiencing almost daily debilitating headaches and psychological and social problems. We pray every day that the tumors will become stable and that she will not suffer any more symptoms.

Despite all of this Victoria is a vivacious, fun and independent little girl who amazes everyone that knows her.
We have watched hopefully in the last year as new discoveries have been made about this terrible disease and even as a cure becomes a possibility…. but it looks like the funding is drying up!!

I recently received this petition to sign to continue funding for research, and sent to all my friends and family, I am proud to say most of the signatures there are our friends and family. But it’s not the 1000 signatures that the initiator is looking to bring attention to this. With your connections and website I wondered if you would be able to get more exposure and get the petition signed.

Hope to hear from you …. and once again … Thank you for all you do to bring understanding, you are an inspiring and amazing man!!

~Ruth~

rnrnuss@aol.com
“The measure of a life, after all, is not it’s duration, but it’s donation”
Corrie Ten Boom

April 24, 2008 - Posted by | neurofibromatosis

55 Comments »

  1. My heart goes out to you, I hate this disease, I hate that my daughter has this disease I pray that my grandchild does not get nf gene.

    Comment by Patricia | April 24, 2008 | Reply

  2. I will pray for your daughter Ruth

    Comment by Brian | April 24, 2008 | Reply

  3. Ruth, I hope you will come join us on this blog and let us help you deal with your challenges. Everybody here has had to cope with this disorder in so many different ways that I’m sure someone here can help make sense of what’s going on.

    Comment by - the blogger formerly known as Lou | April 24, 2008 | Reply

  4. Hi Ruth Hope to see you on the blog.

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  5. Good Morning to all. I’m about to get my coffee.

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  6. good morning everybody Ruth hope to see you on the blog too

    Comment by Brian | April 25, 2008 | Reply

  7. I wish we could get more our our NF2 family to visit the bolg as well. It is a lot of things that will be soon be available
    for neurofibromatisis. Something I’m looking forward to.

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  8. that would be pretty cool Reggie you know I have NF 2 and right now it seems like I am the only person with NF 2 that is on the blog and everybody else has NF 1

    Comment by Brian | April 25, 2008 | Reply

  9. Brian do you know anyone else that have nf2? If you do tell them to come o the blog.

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  10. not off hand Reggie basically the only people I know that have NF is the the people from here

    Comment by Brian | April 25, 2008 | Reply

  11. Wow! Then it would be good to go to camp this year. Are you going to make it to camp?

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  12. I don’t really know I am not sure I am allergic to wheat I can not eat anything with wheat and I know they can probably make some stuff that I can eat but honestly I am very very picky about what I eat because not all the stuff that is wheat free taste that good

    Comment by Brian | April 25, 2008 | Reply

  13. Hi Everybody Im getting ready for a cup of coffee

    Comment by Shelley | April 25, 2008 | Reply

  14. hey Shelley whats up

    Comment by Brian | April 25, 2008 | Reply

  15. man where is everybody

    Comment by Brian | April 25, 2008 | Reply

  16. Hey Brian here Iam

    Comment by Shelley | April 25, 2008 | Reply

  17. I’m here Brian wasn’t sure you would be back. I’m glad you are. Getting kind of lonely here. What’s up Shelley?

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  18. Not too much here Reggie

    Comment by Shelley | April 25, 2008 | Reply

  19. Hi there! Thank you for your encouraging e-mails/posts. I think it’s great that you’ve created this forum. It does get kind of lonely even as a parent when you are trying to advocate for your child and no-one really has a clue! Even the Dr’s seem to be at a loss – does anyone else find that they are “teaching” the Dr’s?

    Comment by Ruth | April 25, 2008 | Reply

  20. PS – are you all from Texas?

    Comment by Ruth | April 25, 2008 | Reply

  21. Hi Ruth, Glad to see you here. I Hope to see you here ofter. I’m in Texas, but hope more will join in from all over. Do you have something plan for the weekend?

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  22. Actually it’s Victoria’s 9th birthday and she is having a horse riding party :)) She is so excited!!

    Comment by Ruth | April 25, 2008 | Reply

  23. Please say Happy birthday to Victoria for me. I know it’s going to be exciting. I was watching the food channel last night. It was about birthday cakes. That is my weak spot. I love big birthday cakes.

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  24. 🙂 I will. She only eats the frosting 🙂 I love any kind of cake!
    Have a good night, I am off to put the kids in bed!!

    Comment by Ruth | April 25, 2008 | Reply

  25. I am from Texas

    Comment by Patricia | April 25, 2008 | Reply

  26. Hi Patricia,

    That is pretty cool to have Ruth visit us. Wouldn’t you say?

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  27. Hi Patricia! I’m in CT! Originally from the UK.

    Comment by Ruth | April 25, 2008 | Reply

  28. Ruth did I tell you how much I love the UK.

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  29. I wonder where is Lou?

    Comment by Reggie Bibbs | April 25, 2008 | Reply

  30. No!! Have you been to the UK Reggie?
    Must go to bed (YAWN!) been a LOOOONG day 🙂

    Comment by Ruth | April 25, 2008 | Reply

  31. Hello, everyone, I’m battling some sinus problems that are eating me alive. No pain killer seems to work nor any decongestant. It;s 1:24 am and I don’t see sleep in my future anyyime soon.

    Welcome aboard, Ruth. It’s always great adding a new member to the blog! Would love yo know more about you such as is neurofibromatosis awareness in the UK didn’t than in CT or US?
    How did you find Reggie’s blog? And what kind of information would you like to get out of thid blog?

    Comment by - the blogger formerly known as Lou | April 26, 2008 | Reply

  32. I signed the petition. I noticed Reggie’s signature wasn’t any where near.

    Comment by - the blogger formerly known as Lou | April 26, 2008 | Reply

  33. I did sing the petition.

    Comment by Reggie Bibbs | April 26, 2008 | Reply

  34. I can’t sleep.

    Comment by Reggie Bibbs | April 26, 2008 | Reply

  35. I signed the petition also

    Comment by Brian | April 26, 2008 | Reply

  36. ok its 10:12 at my house and I am wondering where everybody is this morning

    Comment by Brian | April 26, 2008 | Reply

  37. Saturday, April 26: Already miss the beach, mountains, and everything else.

    Comment by JohnP | April 26, 2008 | Reply

  38. Good morning to everyone

    Comment by Reggie Bibbs | April 26, 2008 | Reply

  39. Ruth No I never been to the UK. Maybe that will change some day.

    Comment by Reggie Bibbs | April 26, 2008 | Reply

  40. Where is skip to the Lou.

    Comment by Reggie Bibbs | April 26, 2008 | Reply

  41. man I John that must stink maybe you can go back soon

    Comment by Brian | April 26, 2008 | Reply

  42. Hey Everybody Im on my 2nd cup of coffee was wondering if Lou was behaving I know Reggie and Brian is

    Comment by Shelley | April 26, 2008 | Reply

  43. Yes I have two cups.

    Comment by Reggie Bibbs | April 26, 2008 | Reply

  44. hey Shelley and Reggie whats up

    Comment by Brian | April 26, 2008 | Reply

  45. man why is nobody blogging

    Comment by Brian | April 26, 2008 | Reply

  46. I have been busy, I bought a bassinet today! I need to get the house ready for the baby, I don’t know if I told yall, but Vanessa wants to come home after the baby is born for about a week or two. So I will need to really get the house ready for a new baby, The baby is due June 27, tht really is not that far away,

    Comment by Patricia | April 26, 2008 | Reply

  47. its good to see you Patricia

    Comment by Brian | April 26, 2008 | Reply

  48. I emailed Reggie earlier and have not heard back from him I hope everything is ok

    Comment by Brian | April 26, 2008 | Reply

  49. {{{{{{{{{{{EVERYBODY}}}}}}}}}}}}}}}

    Comment by Shelley | April 26, 2008 | Reply

  50. thanks Shelley right back at ya

    Comment by Brian | April 27, 2008 | Reply

  51. Hello again everyone!
    Lou you asked about me… well I am the adoptive mom of 3 beautiful children, one of them, Victoria, has NF1 (her biological father had it). I had a google alert set up for neurofibromatosis, which is how I became aware of your group and Reggie in particular.
    My husband and I adopted the children after I had been in the US for 8 years, so I really don’t know much about how well NF is known in the UK – though I do get a lot of hits on my google alert from the UK. Mostly stories of people dealing with it, not so much research and medical information as I get from the US.
    My main reason for contacting Reggie was to have him post the petition, but I was welcomed so warmly I was encouraged to stay around 🙂 Thank you!!

    I guess what I would like to hear more than anything .. is what can I do to make Victoria’s life easier, from the perspective of those of you who have NF. She is an amazing little girl who knows she has Neuro-fibroma-TOAST-STICKS (as she calls it). She really suffers with the headaches. We’ve been blessed with a wonderful school system who are amazing with her learning disabilities and so supportive and caring with her symptoms.
    (I’m not used to “blogs” so I am probably breaking some rules about how much to write here, but my kids are my favorite thing to talk about, they are wonderful!!:-))

    Well, thanks for listening and please let me know your insights, I would love to hear!!

    Comment by Ruth | April 27, 2008 | Reply

  52. Ruth you are not breaking rules here. I love it that you are taking part in this. And I know some of our friends here will tell you there thoughts. I would start with trying to help the school understand about NF. Maybe you want to start with the class. Yes they understand how nf has affect Victor. If would be nice to share what NF is and how many are affected with it. There may be others that have NF in the area and no one is talking about it. Maybe that is something you can start talking about. What do you think?

    Comment by Reggie Bibbs | April 27, 2008 | Reply

  53. Ruth,

    We have a blogger here who also lives in Connecticut. Her name is Emily and she has a son who has NF. I can’t think of a more perfect person to talk to about how you can make life easier for your daughter. Emily, if you are ou there, could you please respond? I promise I might even say nice things about you in the future.

    Lou

    Comment by - the blogger formerly known as Lou | April 27, 2008 | Reply

  54. Emily we miss you. Give the baby a hug for me. May is going to be a TERRIFIC! Month let’s start early.

    Comment by Reggie Bibbs | April 28, 2008 | Reply

  55. I’d love to hear from Emily – thanks for suggesting talking to Victoria’s class what a great idea!!
    I’ve done that with Adoption but not NF!!! Thanks!
    I did send her teachers all the links to the CTF webiste and they’ve been wonderful!

    Comment by Ruth | May 1, 2008 | Reply


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