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Post by tarina on Aug 15, 2004 13:58:50 GMT
is there anyone else out there that sometimes finds the whole situation to much to deal with and has no one to talk to about it,if there is please contact me as i quite often find myself in this position,my daughter is 8yrs old and has lissencephaly,she also has fits and has a entre star peg fitted
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Post by Stephen Nett on Aug 30, 2004 19:28:36 GMT
Tarina, I come from a big family that has always been very close. On July 22, my sister gave birth to her 4th beautiful baby boy. We knew in advance that my nephew, Drew, was going to have some sort of heart defect. What we had not realized was that he would also have a brain abnormality. My family and my sister's family are all trying to come to terms with what Drew's situaition is. It seems that every corner we turn it is more bad news. My sister has a web site for Drew at "caringbridge.org/sc/drew" She has posted some journal entries in which you can feel her pain and frustration and fear. All of which you must know all to well. I have been trying to find out information and talking to people as much as I can. I just feel so helpless at times...Know that you are not alone. My family has not even really begun to understand what we are dealing with. I wish you the best and will put your family in our prayers.
Stephen Nett
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Post by Lori Taylor on Sept 5, 2004 8:04:44 GMT
Hi there my daughter Madison who is almost 6 months old was diagnosed with Lissencephaly. I am a single mom and sometimes I find this all to be very overwhelming. I live in Vancouver Canada and nobody around here seems to know what lissencephaly is. Madison was born 4 months prematurely. To me she is a miracle and means the world to me. She has only spent 2 weeks at home with me and is now back in the hospital for seizures and feeding difficulties. She will be going in soon for a g/j tube. If you ever need anyone to talk with it would be great to talk with others that have a child with the same condition and I would be open to talking with you. My email address is softballgirl4me@hotmail.com and I am also on msn messenger at the same address. Feel free to email me anytime.
Lori Taylor
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Post by claire and imogen on Jan 3, 2005 11:35:06 GMT
Hi I know what ur going through . When I got told about imogens condition i went into total denial, and pretended and told people she was small cos she was prem. But its a case of you have to get used to it cos it isnt going away. Ive got a close family and at first my dad Imogens grandad wouldn't have anything to do with her cos he was scared of her dying. Our first dianosis was Imogen wouldn't live to the age of 1. But now my family is great with her treat like any normal kid and that's the way i like it. Until recently i havent had anyone to chat to about lissencephaly but i do now and i've got to admit it really helps talking to someone who knows what ur going through. Im here if you ever need to talk my email is mirror_princess@hotmail.co.uk. Antime you need a chat just e mail me. I'm also im msn mess with the same addy.
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caroline and declan kelly
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Post by caroline and declan kelly on Mar 13, 2005 18:59:13 GMT
My first reaction and only reaction was i loved this child no matter what, declan is now 2 and a half and when he was first diagnosed he was 3 months old.
As time goes on the condition changes mainly his seizures which so out of control, he is tube fed very severe reflux but he never cries or complaines so we dont really have the right to question or complain. dont get me wrong its not easy but these children arent just given to anybody they are given to special people like us to love them.xxxxxxxxxxx
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NOMI
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Post by NOMI on May 1, 2005 0:29:34 GMT
As I read everyones comments. My heart breaks. I have a 20mo girl w/Liss. She is my 1st. born. My husband & i don't think about having more. I think we are affraid of the unknown. One thing i do know , we are all in it 2gether.
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Post by angels on May 1, 2005 7:02:33 GMT
Hi Nomi,
You are not on your own even though it will feel like it, because, at the end of the day, yes, we are all in the same situation. But, she is your little angel. We have another little boy, Kyle, who is 8 yrs old and has grown up a lot quicker than normal.
You will get the help and once that is established who knows what the future will bring your family!!
Feel free to e mail me at anytime.
love
Caroline and Declan xx
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NOMI
New Member
Posts: 7
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Post by NOMI on May 6, 2005 5:36:34 GMT
You're right. But I can not help but feeling the way I do. I often times feel like just screaming my head off & crying like a little baby myself. But I don't. I don't because ... well I think that would make me a weaker person, or I honestly don't know why I don't . I am so busy trying to save the little energy I have on Mayanin, my daughter. I don't have enough energy for myself. Does that make any sense?
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Post by darline on Sept 28, 2005 15:43:45 GMT
My Sammy has Liss and she is almost mute (signs for communication) , has major mood chnages, fits of rage, learning delays. Until she was 10 she was very underweight. At age 14 she is thriving and maturing in to a beautfiul young women....when we learned of her Liss at age 3 we were crushed, Sammy was adopted at the age 7 weeks and she saved our falling apart world. She is our miracle. You need to focus on giving her every oppunitiy in the world to enjoy life and to be loved and to give love, and all the pain and sorrow you feel will melt away. We have alot of difficulity with the school system, they have trouble teaching her and do not really reconize her disablitiy as they should. We are working on that so she has every oppunitiy to learn and grow as all children have. Sammy is bright, aware, eager amd loving to no end, this should be enchiched and not put on hold. We continue our struggle everyday to insure Sammy get all she can out of everyday! Thats our goal, and I hope you will grow with the love in your childs eyes as you help them to thrive and grow also. Does others have educational issues they could share with me, I really would like to hear how others have handled the local school systems. Thanks!
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Post by elizabeth1045 on Nov 6, 2005 14:28:24 GMT
Hi, I haven't been on this forum for some years but would like to tell you about our Ruth. She is now 22. When she was born we understood she wasn't right (she wasw born on a remote island) When she was 7 months we went to Cape Town where she was diagnosed with hydrocephally and a PV shunt put in. However, she never improved. When we was around 4 (back in the UK) she was diagnosed as having Walker Warberg Syndrome.
She has been a joy to us. She has no communication but is adept at making her feelings known by shouts, moans and laughter. Loves hugs and human contact. Seems to enjoy music. Had very happy schooldays in an excellent primary school for special needs and then as a weekly boarder for secondary special needs school.
She is now 22 and is living in a wonderful residential home, getting all the care and stimulation she needs. I would say she has a very happy life. Wherever she has been, in schools, respite centres and now her 2nd residential home she has made her mark and everyone has fallen in love with her.
So I would just like to say to those who are facing a lifetime with a child born with one of these conditions, don't despair. Until Ruth went to secondary school she lived at home and did everything with the family. As she got heavier life became a little more difficult and so we had to make the decision that she would be better in a good residential care home, when she left school.
Some of the activities she enjoys: ice-skating (the carer takes her onto the ice in her wheelchair and whizzes her around), music, going out to pub lunches, country walks in her chair, swimming,shopping - loves noisy brightly lit shopping centres.
We don;t know what the future holds for Ruth. She has had several severe chest infections and last year nearly died. However, in her new home, with physio weekly and all her activities carried out weekly she is very well again. But she is a happy, contented young women.
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Post by mac on Sept 5, 2011 14:36:15 GMT
I am a single mom and have a 13 month old with lissencephaly and a cyst in the back of his brain. He is my first child and it is horrible to never know if he will walk or talk or do anything in his life. He can not crawl walk says random words and rolls over. But he never babbles. but the whole thing is very depressing to me. I always wanted a baby and now I have one but they tell me his prognosis is poor. What could your child do at his age and what can they do now . I also am considering having another baby so I can have another child to love if something happens. And to help me not dwell on the things he can't do that the other kids can. but never to forget him I love him very much and he would be able to walk if possible. Thanks you can contact me at lethia.mcnair@yahoo.com
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Post by Nettee on Jul 19, 2012 6:52:25 GMT
I am a single mom and have a 13 month old with lissencephaly and a cyst in the back of his brain. He is my first child and it is horrible to never know if he will walk or talk or do anything in his life. He can not crawl walk says random words and rolls over. But he never babbles. but the whole thing is very depressing to me. I always wanted a baby and now I have one but they tell me his prognosis is poor. What could your child do at his age and what can they do now . I also am considering having another baby so I can have another child to love if something happens. And to help me not dwell on the things he can't do that the other kids can. but never to forget him I love him very much and he would be able to walk if possible. Thanks you can contact me at lethia.mcnair@yahoo.com I also am considering having another baby so I can have another child to love if something happens. And to help me not dwell on the things he can't do that the other kids can.~~Wow! I have 4 kids. Kurtis is my 2nd. He was 5wks premature but I knew something else was wrong. He only weighed 3lbs 14oz at birth. He didn't need help breathing or anything just had to learn how to suck. For him to drink a bottle. He didn't walk until he was 4 1/2yrs old. He talks some now. That was a very slow go. He's been going to school since he was 2 1/2yrs old. He graduated this yr. He drools and is in a diaper. He wasn't diagnosed until he was 17. We were very lucky and he didn't have seizures until just before he turned 18. Don't know why but we're not asking.... He'll live with us as long as we can keep him. He is strong and can get aggressive. But at the same time he is very loving and all his teachers and care givers have fallen in love with him. He also has 2 younger sisters who are 10 and 6. I admit I waited quite a while to have another child out of fear and I wanted to know what living with a special needs child was going to consist of. We always thought he had CP before he was diagnosed with LISS. That's what his traits are like. That and a bit of Autism. My email is rgriffor2002@yahoo.com if anyone ever wants to talk.
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Post by padmaja on Oct 11, 2017 16:35:52 GMT
Hi! I'm 17 and my sister has lissencaphaly and she is 9 years old. I'm finding it hard to see her like this. would really love it if i could talk to someone in the same situatuon. It's really really painful! please help!
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