ninni
New Member
Posts: 1
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Post by ninni on Dec 3, 2004 18:47:00 GMT
Hi! My son has got w-w syndrome,are there any other w-w parents out there??? He seems to be the only child :Dre in Norway with w-w.. Love to hear from you!!
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Post by elizabeth1045 on Nov 6, 2005 14:34:03 GMT
Hi Ninni, Have just read your post. Please read mine under another heading which I've just sent off - I think it was 'new diagnosis'. Its a little about our Ruth who is now 22 and was diagnosed with WWS when she was about 4
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Walker warburg syndrome
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Post by Walker warburg syndrome on Feb 11, 2006 1:14:54 GMT
Hello, I have a cousin who has Walker Warburg Syndrome who is now 18 yrs old. We were told she is the oldest living personhere in the USA with it. I was curios about your daughters condition . Any information you couold give me would be greatly helpful---Thanks my email address is sofladora@yahoo.com
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Post by A Mahmood on Mar 7, 2006 12:55:00 GMT
My son has something very similar to Walker Warburg Syndrome. We are still waiting for an accurate diagnosis. He is 18 months old
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Post by siffus on Mar 26, 2006 14:06:31 GMT
Hi A Mahmood You write that your son have something very similar to Walker Warburg syndrom. In what way??? I am very interested to hear. Maybe we are in the "same boat". Our son, 7 months old, has no diagnose but Lissencephaly. But after the MRI the doctor said that it seemed like Liss. Type II. But they can not find any mistakes in the chromosomes and so. We have now been told that there are nothing more they can do, no more tests. So we end up with no diagnose. They have been checking for Miller Dieker as well due to his heartabnormalities, but test was negative. We are told when they cannot find the cause/ "defect" in him, they cannot find it in us either, so we have not been tested.
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Post by claire06 on Apr 6, 2006 19:10:58 GMT
Hi my daughter sounds just like yours siffus>Like your son we have been told they think its LIss Type II and likewise cannot find any chromosone abnormalities. Miller dieker can up negative and i also thought imogen had WW but was told no again. I was told ther was no more tests but alais Dr daniela Pilz has come up with some new ones which at the moments they are carrying out with yet another sample of imogens blood. So dont give up hope just yet get in contact with your genetists and ask her to get in with daniela at cardiff. Oh and imogen has a heart mummer to.And theres not defect with us either.Hope this gives you some hope we can never just give up but look to new things.
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Post by siffus on Apr 12, 2006 13:00:14 GMT
Hi Claire Thanks a lot. I for sure will be very interested in hearing your test results when you get them.
Who is Dr. Daniela Pilz and where exactly can we contact her?
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Post by claire06 on Apr 12, 2006 19:17:04 GMT
Hi siffus. She is a specialist genetists that closely works with Dr Dobbins himself. She is based at cardiff that all i can tell you .But she knows wots shes doing.
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Post by siffus on Apr 14, 2006 21:26:34 GMT
Thanks Claire! I will remember this for sure and ask our genetic when we are going to see him in June (long waiting time... )
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Post by nini on Aug 9, 2006 16:00:50 GMT
Hello . I am sorry i havent given any answer to all of you. Our son Brian past away feb 6. 2006. He became 2.7 years old. In his short life there was so many ups and downs. He nearly died so many times. His lounghs was very poor. But i would do all once more, cause he gave us so much. we learnt to see all the good things,and take one day at the time. There are not so many of our special children so no one can tell us how things will turn out. I miss my little boy so much but i know he is in a better place playing around. I wish you all to be happy the time we all are given. Dont look at all the bad things but see the good things.Cause there are lots of it if you give it a chance. Hope you understand my english.. Love from ninni
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Post by nini on Aug 9, 2006 16:08:50 GMT
I Wrote the wrong name.. im not nini but ninni. My sons name was Brian
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Post by gromit5380 on Sept 10, 2006 21:05:42 GMT
Hi, I'm new, and I was wondering how come there are so many older children with WWS, when this website says that it is uncommon for babies to survive past one year? Kate
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Post by Elizabeth Edwards on Sept 12, 2006 15:53:26 GMT
Hi, according to my reading it is usually stated that children with WWS don't usually survive beyond childhood or adolescence. Our Ruth (who has WWS) is now 23. She has had a run of ill health over the past couple of years with frequent infections (usually thought to be pneumonia). The last time in hospital - about 3 months ago - she went in very very poorly and we though her time had come. However, after 3 week on IV antibiotics she rallied but then would not eat or drink much at all. After a trial back at her home it was decided to put in PEG for feeding. It has been a great success and she is as cheerful and happy now as she has ever been. I believe that for the past couple of years she might have been suffering from malnutrition as I don't think she's been eating or drinking enough. Now that she's getting the proper feeds into her she absolutely great. I am sorry we didn't have a PEG in sooner, but because she wasn't losing weight it didn't occur to us that she was malnourished. She lives in a small home for younger people with complex needs and leads a really good life.
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Post by vikki on May 27, 2008 21:09:01 GMT
Hi I live in Newcastle in the U.K and had a 2 month old daughter who died from WWS in 2006. (sophie). I was under the impression that wws suffers died early and MEB children lived longer and that was the basic difference (or at least that was the way it was explained by our geneticist). Anyway would love to talk to someone in the U.K about wws
vikki
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Post by Anita on Nov 6, 2011 20:16:37 GMT
Hi, My son has got Walker Warburg Syndrome who is now 6 years old. We live in Birmingham in the UK. I would like to talk to someone in the UK but not only about WWS .
Now I know that children with this condition have a chance to live longer.
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