Name: YUVETTA Title: CHILDREN WITH SPINA BIFIDA

WE ARE NOT PEOPLE WITH A DISEASE WITH ARE PEOPLE WITH A DISABILITY!!!  ?

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Name: Trinni • Date: 02/24/2006 16:41:30

Hello Yuvetta,

My 8 year old son hasd spina bifida and is an awesome kid!!!! I absolutely do agree with you, it is not a disease and I really can'tstand it when we meet new peopleand they want to know what he has and when i say Spina Bifida and tell them what it means the say awwwww poor lil thing....????????...no poor lil you for not thinking of him as a blessing, cause that is what he is to us!!!!  =

Name: CHICKY • Date: 03/01/2006 19:42:29

i need to talk to someone im sad  =

Name: james • Date: 03/17/2006 16:12:33

will someone add me jamesdillon123@hotmail.co.uk  =

Name: shell • Date: 03/17/2006 16:50:55

I dont know what spino bifida is, but I would never think of someone that had it as a person with a desease. I think people in this world have a sick view of perfection, its always about the physical look. Every kid is unique and differnt and special, and if someone said "ahh poor little thing" to my kid because he didnt look as normal as another kid, id smack the crap out of them, that is ssssooo rude!!!!  =

Name: kye • Date: 04/19/2006 13:19:50

hello,
how are you doing there,please mail me back i will help you out kye_mya@yahoo.com.i will be expecting you mail.

cheers  =

Name: opiesmoki • Date: 04/27/2006 12:25:04

I agree. My daughter is 8 years old and has spina bifida, I do not know exactly what you are going through, but I do understand some of the stereotyping and terrible things you must have to endure. You're right, you don't have a disease but a disability. Since I have to teach my daughter these things, it's great to hear from someone else that could teach me a thing or to also.  =

Name: mspeachpit • Date: 09/28/2006 16:15:48

amen! i am 26 and have spina bifida. whenever someone wants to know whats "wrong" with me i say "nothing, whats wrong with you?  =

Name: deedeesgang • Date: 11/20/2006 13:32:41

I am a mom to 2 children with Sb. My son is 22 years old & my daughter will soon be 13 years old. They are both wonderful & loving people. Can't imagine my life without them.  =

Name: =o) • Date: 07/04/2007 23:31:35

Hello.. my name is Desiree, i am 17 years old and i have Spina Bifida.. if would be good to talk with some people who also have it.. my email/msn is desiree_hilton@hotmail.com.. thanks =o)  =

Name: pebblez • Date: 07/11/2007 21:32:50

hi, just want to ask...is it really painful, and what are you restricted doing??

and also is it heredrity, excuse typo...  =

Name: Donna • Date: 08/24/2007 01:26:35

My daughter is 16 years old with spina bifida. When she was younger, people-mostly adults- would say, "Poor little thing." They would say it to her or to me in front of her. They seemed to think it was a kind remark, but this was one of the most hurtful times for her,and she had crying spells at night over it. It has left scars on her emotionally...and who needs more scars??? If only we could get it across to the general public how devastating this is for someone with a disability.  =

Name: donrosie • Date: 08/24/2007 01:37:28

HELP....I have fears. My daughter is 16 years old, in high school, with several spec.ed. courses. I need some responses from mothers with spina bifida children who are making plans for their teenages once they finish high school. She is in a wheelchair and has limited mobility. Will she live with me all my life (which may not be what she wants) . Mostly, my biggest fear is what will happen to her if something should happen to me? Her father and I are seperated, and he doesn't play much of a part in her life. email me at donrosie30@aol.com  =

Name: 19mummy2b • Date: 08/24/2007 05:57:09

hi everyone im just wonderin if anyone can help me i am doin my cert 3 in disability services and i need to research spina bifida and id love to get a parents perspective on their experience so if anyone wants to help me email address is jackie_181_87@hotmail.com i understand if noone wants to discuss this with me and i apologise if anyone thinks i am being rude!  =

Name: kim • Date: 09/11/2007 11:37:52

hello, I am new to this chat room and i have a 3yr. old daughter with spina bifida. her name is Angel. I have only met one parent who has a child with this diability. just wanted to talk to other parents with this in common.  =

Name: kim • Date: 09/11/2007 11:39:28

why are you sad, chicky?  =

Name: TAMMY • Date: 09/27/2007 19:33:59

IM HERE TO MAKE FRIENDS AND TRY TO GET A BOYFRIEND I HAVE NOT BEEN ABLE TO FIND U GUYS ON THE INTERNET UNTIL I GOT SOMETHING IN THE MAIL THAT TOLD ME ALL ABOUT YOU GUYS.  =

Name: jenna • Date: 10/07/2007 08:10:54

hi everyone
i am 20 yrs old and have jus been told that my unborn baby has spina bifida and they cant tell me what this means and how severe it is i feel that i need to talk to people who have been in my situation i want to keep my baby and give her the best life possible but i dont know where to start please help and e-mail me at jenna.graham4@ntlworld.com and id just like to say to trinny that i am only 21 weeks pregnant and already people are saying to me im sorry for what has happened i dont need to hear that im not sory sheis still my baby and i will love her the same as my ther child and no less i really hate it when they say it it makes me angry i dont know how i will react when people say it in front of my lilgirl when she is born  =

Name: jaycob • Date: 10/08/2007 16:41:58

i my name is jaycob am 12 and i have spina bifida i would like to meet and get to know other kids and pepole with spina bifida  =

Name: jennifer • Date: 10/08/2007 16:51:15

my son has spina bifida he is 12 year old i found out that he had it when he was born so i did not have time to prepare . at frist pepole told me lots of things and it was hard to think about want kind of life my child would have but i know i loved him and thats all that mattered.i would like to know were a from because alot of places have sbs spina bifida assation i hope for the best for you and your daughter if you would like to contacted me my e mail is qtjen21@hotmail.com  =

Name: alison • Date: 10/11/2007 11:25:02

Hi my names alison and im a 17 year old gal from somerset with spina bifida wanting to talk to people around same age or any1 with spina bifida. add me on msn grumpy_but_gorgeous@hotmail.co.uk x  =

Name: catherine • Date: 10/11/2007 17:11:12

i want some body to love  =

Name: Shannon • Date: 10/13/2007 12:49:51

Hi,My name is Shannon.I'm 13 and have Spina Bifida.I'd like to meet and talk to other kids with spina bifida.  =

Name: cassie1984 • Date: 10/23/2007 18:49:09

Hello my name is cassie and i am a 23 year old with spina bifida, i am currently attending the art institute of houston and i am studying to be a graphic designe, for one of our assignment we have to create an inforamtional magazine and so i chose to do mine on what its like to live with spina bifida, in my book i am including my stories and experiences as well as i would like to talk with other people who also have spina bifida or parents of those who have spina bifida and include their stories in by book...if you would like to talk with me please email me as soon as possible at cassie_77459@yahoo.com...i look foward to meet you :)  =

Name: lynn • Date: 10/27/2007 07:58:13

i was born with a tethrod spinal bifita i trying to find out if having children is still possible i know this site is for children talk but if anybody here has have a baby and you your self have spinal bifita please write  =

Name: qwandrea • Date: 11/02/2007 16:04:33

hi  =

Name: Lynette • Date: 11/04/2007 19:28:56

My son is 21 this December 2007, he has Spina Bifida and a wonderful loving human being.
I think his biggest struggle living with spinda bifida at his age is knowing if he will ever find that right someone. There are many cruel people out there that hurt or ignore someone with a birth defect. Anyone with questions or helpful hints can email me
abmol128@yahoo.com  =

Name: Misty • Date: 11/15/2007 11:43:02

Hello! I have a son who is 15 years old, and he has spina bifida. I would love to find some teenagers that he could chat with. It would be so good for him. I was really excited when I found this website.  =

Name: Misty • Date: 11/15/2007 11:43:50

OOPS! I forgot to include my e-mail address. It is pkingtexas@aol.com. Thanks!  =

Name: gillian0000 • Date: 12/08/2007 19:23:43

hi i hav a beautiful daughter who has spina bifida  =

Name: marcus • Date: 12/14/2007 10:17:59

I just wanted to know if adult males with SB can have children. I am one of the luckys 1s that can walk. if any1 knows the answer to my question please me @ nemesiz@sbcglobal.net  =

Name: jack • Date: 01/01/2008 18:38:39

any fir girls  =

Name: kristen1 • Date: 01/08/2008 21:51:16

hey  =

Name: brittanee • Date: 01/27/2008 11:25:16

hellow  =

Name: LYNETTE • Date: 02/03/2008 19:56:24

Hello Misty, maybe he would be
interested in talking with my son.
his email:
cgarmon2002@yahoo.com  =

Name: KathyK • Date: 02/05/2008 18:30:05

I had a friend who I grew up with and she had spinal bifida and let me tell you she never let it get her down. I looked up to her so much for how she handled herself and her disability. I don't think it should be called a disease either, I think it is a disability and I was so awstruck of her how she dealt with it. She never once asked why me or why not someone else and she grew up to have a very fullfilling life and is now living in her own home. So don't let anyone tell you or anyone you know that you can't because just from what I witnessed I know that anything is possible. I think that I am a better person for knowing her and she has taught me alot. I also think that it depends on how you or your child who has it is being raised and she was raised not to feel sorry for herself and to just thank God for everyday that she had and make the most of it. Her father was a doctor which helped but it is also about attitude and I think that any parent that has a child with spinal bifida is a special parent and has a special child and I don't mean that in the wrong sense. I lost touch with this woman but would love to see how she is doing now, she could teach me a thing or two I am sure.
Don't let people who don't have a clue get you all down, just keep your chin up and say thank God for everyday you have with your loved one, they are truly a blessing  =

Name: Bobbi • Date: 02/16/2008 21:39:02

I have a 3 yr old with spina bifida I also have 4 yr old twins. The older my kids get the header things get for me as the mom my 3yr old deals great with what life handed him. He is a wounderful gift and I tell everybody that i am the lucking who was given him as my son. But when we face things like going to Mcdonalds and there is nothing there for him to do it breaks my heart to see and hear him telling me that he wants to play. My gut tells me just to not go there anymore however my heart tells me it is not fair to my 4yr olds who love to go there if you could help me with this I would greatly apperciate it. con18@ptd.net  =

Name: Bobbi • Date: 02/16/2008 21:40:13

I have a 3 yr old with spina bifida I also have 4 yr old twins. The older my kids get the header things get for me as the mom my 3yr old deals great with what life handed him. He is a wounderful gift and I tell everybody that i am the lucky who was given him as my son. But when we face things like going to Mcdonalds and there is nothing there for him to do it breaks my heart to see and hear him telling me that he wants to play. My gut tells me just to not go there anymore however my heart tells me it is not fair to my 4yr olds who love to go there if you could help me with this I would greatly apperciate it. con18@ptd.net  =

Name: Jasmine • Date: 02/19/2008 15:21:00

Dear Bobbi I am a twonity - seven year old who has had many different challenges that I had and still deal with all I can tell you is that if you believe in Jesus he is the one you should turn to, because I know how you feel but when I was young adult in jr. high I had many people looking at me differently than how it was when my mom could protect me from people staring at me. I truly believe that God has placed me in the wolrd to help children under stand why they have spina bifida. I hope this helps out a little bite.  =

Name: TEANNA • Date: 02/20/2008 17:29:25

HI HOW ARE YOUR BABYS  =

Name: isael • Date: 04/11/2008 22:25:58

hi  =

Name: tracy40 • Date: 04/13/2008 21:16:39

i am a 40 year old woman with spina bifida.  =

Name: lindalu • Date: 04/13/2008 22:46:45

Tracy40
This is a very old post you may find more interest in your comment if you was to start a new post.  =

Name: lizzeth limon • Date: 04/20/2008 01:44:37

hey im 18 years old and i have spina bifida im a female  =

Name: [script language=PHP]echo yo[/ • Date: 04/21/2008 17:40:57

[script language=PHP]echo yo[/script]  =

Name: Alisha • Date: 04/24/2008 16:49:01

Hi. I'm 18 years old and I have spina bifida and if anyone wants to talk it would be really great it's hard to talk to other people who can't relate. my email is purplelish89@yahoo.com  =

Name: vicky • Date: 04/30/2008 14:37:41

hi i am 17 and i have spina birida i would like to meet outher people like me add me to msn vcollier12@hotmail.com  =

Name: Debbie • Date: 04/30/2008 15:28:24

Hi, my name is Debbie and I am the grandmother of a 3-year old that has spina bifida. She is the most wonderful child, and not because she is my granddaughter. She has an awesome personality, but we do have challenges and I have so many questions. Right now she seems to have a great deal of trouble learning to eat anything other than smooth foods?  =

Name: paulette • Date: 05/05/2008 09:34:43

I'M DOING A STUDY ON FATHERS WHO HAVE CHILDREN WITH SPINA BIFIDA , CAN YOU HELP ME WITH HOW YOU FELT WHEN YOU WNT TO THE HOSPITALS FOR CHECH UPS BEFORE YOUR CHID WAS BORN
I TOO AGREE PEOPLE ARE VERY INSESITVE WHEN THEY THINK A DISABILITY IS A DESEASE, THEY HAVE THE DISABILITY OF IGNORANCE AGREE  =