When Vanessa Smiles

When Vanessa Smiles

Hello, my name is Vanessa and I am 13 years old. I was born on January 07, 1993 with a neurological disorder called Rett Syndrome. I cannot walk, nor can I talk. My Grandma has decided to make me a webpage so that everyone can see what a beautiful little girl I am. When i was born, everyone thought that I was the perfect baby because I was so good. Then slowly the symptoms of RS started appearing when I was about a year old. By then, I had trouble sitting up and couldn't seem to be able to hold things in my hands anymore. A few months after my 1st. birthday, they brought me to the hospital to find out where all these problems were coming from, and especially to find out why I was constantly putting my hands in my mouth. The doctor decided to keep me there for a few days to run some tests. My Mommy stayed with me. Then they gave my Mommy the news. I had Rett Syndrome. I was losing my motor skills, and not long after that, I couldn't do anything by myself. I go to a special school. There is a special bus that picks me up every day and takes me there. I am almost always in a good mood and my Grandma says I have the best smile she's ever seen.

Vanessa Lynn LeBreton

My Favorite Links:

Important link to view other girls like me and learn about this disorder
www.rettsyndrome.org

My Grandma

Jane

Name:

Email:

[email protected]

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Here I Am



Here I Am

	You can look at a few pictures of me. Aren't I pretty? I am mostly always smiling too.



		What a smile



	I am happy



		Grandma and me


	My sweet face

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Me and my family



Me and my family

	Here I am with my family.




	Me and my mommy.
		Me and my little sister Krystel





	Me and Grandma again.


		Me and my teddy bear.

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More Pictures of Me and My Family



More Pictures of Me and My Family



	Me and My Grandma	Grandma, my Mommy and my little brother Raphael.






	Me and my Great Grandma.
		Grandma and my little brother Raphael.

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A Tribute to Vanessa Lynn LeBreton

Living With Rett Syndrome

Vanessa Lynn LeBreton

This is a page Grandma made for all the little girls out there living each day with Rett Syndrome. Only they know what I live with day after day. I am confined to my wheelchair. I cannot speak, walk, talk, nor do I have any motor skills. They were all lost with this disorder. I live with epilepsy, and cannot use my hands. I can only communicate with my eyes. I will be having an operation in January of this year, 2005, to have a feeding tube placed in my belly and will be fed that way. I am forever hand mouthing, which means I always have my hands in my mouth. I suck in the air all the time, which is no good for me, but I can't stop doing it. I have cronic constipation and lots of colic..ouch, does that ever hurt. UPDATE: Well I had my operation on Wednesday, January 18th. at the Montreal Children's Hospital. It went well, but I had to stay at the hospital until Friday, January 20th. cause I had a fever. Then I was taken home by ambulance at 9 p.m. so I would be laying down. Grandma came to see me the next day and I was all smiles, but she tried to not make me laugh cause I still had the stitches in my belly. They took the stitches out on Wednesday January 26th. and the doctor said I'm doing just fine. Grandma is glad its all over cause she was losing sleep over it, just cause she loves me so much.

I'm just a wee little girl.

We are just beautiful little girls born with this neurological disorder. They don't call us "Silent Angels" for nothing...it is because we cannot talk, but are little angels. Grandma says that she thinks that we understand, and that its everyone else that does not understand us. If we could talk, we would have so much to say. We love to laugh. And most of all, we need everyones love and support to get us through each day. So if you have come to visit my web page, please support the Rett Syndrome Association, you can visit their web site. The link to the site is posted on this page, and while in there, you can visit "Other Rett Angels" just like me. While in the RS site, you will see Julia Roberts, who narrated the movie "Silent Angels" which you can buy....it is well worth it because it tells all about this disorder and answers a lot of questions I am sure you have. It will surely be worth the visit . Please take a minute to sign my guestbook before you leave, that will make Grandma happy.

An Important Link For Us Girls...Please click below.

Rett Syndrome Association

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See who's visiting this page.

UPDATE:. Well, we are now in September 2005, and I have to say that I am not doing very well. The nurse has told my grandma that I am probably at the end of my journey here on this earth. My grandma is SO SAD.....she does a lot of crying. She loves me so much that she is having trouble with the news. . The Make A Wish Foundation has made my wish come true....A swing with a hammock (cause I can't sit) Wow, that made me happy, cause I love to swing. . My grandma comes and sits with me EVERY day. She reads me stories and rubs my forehead and holds my wee hand. Her friend Michael visits me EVERY Tuesday night too. He fell in love with me, and helped my grandma make pre-funeral arrangements for me. All this has my grandma crying all the time. . Oh yeah, I almost forgot, Grandma got a tattoo for Mother's Day...my name, with the RS logo above it...wow huh. She says I'll be with her always. . I recieved a mattress last week. It is rented cause, you're not gonna believe this, but it is $17,000. to buy it.....wow huh. I need it because my scoliosis is so bad, that I can't lay on a regular mattress. But I must say, I am in much less pain with the new mattress. It has air bubbles and is plugged into the wall and the bubbles ripple all the time.. I am on morphine day and night. I am not the happy little girl I used to be anymore, cause I can't breathe properly and I am in a lot of pain with my back. My heart is twisted and pushing into my lung, so it is hard for me to breathe and I can't clear my lungs when I cough. I'm not feeling very good these days.. Well I'll give another update later on I guess.. UPDATE.....WE ARE NOW THE FIRST WEEK OF MAY 2006. My grandma hasn't been posting updates because she has been in Moncton N.B. since December 30, 2005, taking care of her mommy, my great-grandma Martha (you can see a picture of me with my great grandma here in my site) she was diagnosed with colon cancer. Grandma took the plane home twice and came to visit me both times...she sure misses me. Well my Grandma Jane is now coming home. Her mommy passed away on Thursday April 27, 2006. That made my grandma cry so much. AS FOR ME, I'm still hanging on. I sleep a lot because of all the medication, but still smile when I'm awake. Grandma will post another update later... UPDATE....WE ARE NOW MARCH 8, 2007. I am not doing well again. I had double pneumonia this winter, and beat it. But I have been losing all the weight I had gained when I had my feeding tube installed. I am on morphine every 4 hours for my pain, amongst other meds. I just got out of the Montreal Children's Hospital. I spent 7 days there, and Grandma, of course, was with me. She sat beside my bed all that time so I wouldn't be alone there. She always worries about me. They injected Botox into my saliva glands and it hurt me. I cried as I stared into Grandma's eyes. Grandma was crying to see me in pain. Besides that, they still don't know why I'm losing all this weight because the tests they did on me all came back negative. So they said it is probably the Rett Syndrome and they can't do anything for me. Anyhow, I'm back home again. Grandma says I'm quite the little fighter. And she is right ! I am the LOVE OF HER LIFE !!! Here is a link to see recent photos of me: Sign Guestbook View Guestbook