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Post by theresa on Apr 19, 2009 21:11:48 GMT
Hello there, my name is Theresa. I have a daughter, Paige, who was diagnosed with Isolated Liss on November 28th, 2008. Paige was born June 24th, 2008. I had a prefectly normal pregnancy and the easiest delivery you could ask for. Everything was wonderful until Paige turned 5months and started having infantile spasms. I live in a small northern town, and the doctors here kept telling me that she just had gas. Since this was my second child, I knew something wasn't right. My husband and I took her to a larger city, and that was when our life changed. I was just wondering if there were any other children in Canada with Liss.
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Post by melissa on Apr 21, 2009 14:55:05 GMT
Hi Theresa, My name is Melissa. My son, Jesse, who is 3 years old was also born with Lissencephaly. We are from New Brunswick, Canada. You can e-mail me at melcle@nb.sympatico.ca
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ellen
New Member
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Post by ellen on Apr 28, 2009 20:57:48 GMT
Hello, my name is Ellen and my daughter Arianna and I live in Richmond Hill, Ontario. Arianna was diagnosis with Lissencephaly at the age of eight months. I myself have been finding it hard to find support and information on Lissencephaly. Alot have people I have spoken to have not even heard of this condition. Were in Canada do you live? I would love to meet with and chat to some parents and try to work together to get more information and a support group. There are alot of support groups out there but not just for Lissencephaly.
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Post by theresa on May 1, 2009 18:48:09 GMT
Hello Ellen, Thanks for the response. I live in Fort McMurray, Alberta. Feel free to call me anytime at 780-790-7155. My name is Theresa.
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lisam
New Member
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Post by lisam on Jul 8, 2009 1:46:35 GMT
Hello everyone My name is Lisa. I live near Calgary AB, and I have a daughter with congential muscular dystrophy and 'PMG' over 75% of her brain. I have been told that PMG and lissencephaly are similar/the same. You can email me at dlmueller@shaw.ca anytime.
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Post by taisha on Nov 2, 2009 21:53:34 GMT
My name is Taisha. I have a son named Damien. He is diagnosed with Cerebral Palsy, Polymicrogyria and Epilepsy. For those who do not know what Polymicrogyria is, it ,means, (poly) many (micro) small (gyria) folds in the brain. So his brain is almost as smooth as glass. I am from Thunder Bay, Ontario Canada.
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Post by Amanda on Jan 18, 2010 14:46:20 GMT
Hello everyone, My name is Amanda and I wanted to let you guys in on a foundation that I work for here in Arizona, United States. Foundation for Children with Microcpehaly is the only 501c3 in the world dedicated to helping children with Microcephaly, Lissencephaly, Polymicrogyria, and other closely-related neurological disorders. Please check out our website: www.childrenwithmicro.org. We have a Google chat group with hundreds of participants from all across the World, we have special programs for our special stars, an Annual Convention (held in June) where we all meet for three days, pictures, advice, ways to connect with other parents, etc etc etc. If you have any questions, please feel free to email me at amanda@childrenwithmicro.org Best wishes, Amanda
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Post by Shannon on Oct 4, 2013 10:56:17 GMT
Hi there, My name is Shannon and my baby boy Van (twin to his sister Daisy) has recently been diagnosed with Lissencephaly & microcephaly. We live in Barrie, Ontario. I had a very normal, un eventful pregnancy with the twins and even had a super easy delivery. Van's development delays started to surface and my concerns led me to Yhe Hospital for SiCk Children. Van is just 6 months now, but was diagnosed at 4 1/2 months. We are in the best hands & the most amazing Team, however I have so many questions. This site looks like just the place I need to be.
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Post by Neda on Jan 6, 2014 16:52:11 GMT
Hi All, I am a new mom with Lissencephaly condition. We live in Maple, Ontario and my 8 months old son was diagnosed with Liss 2 months ago. I'd be glad to have some chats or even meet with u guys that live close to us. My son is under treatment in Toronto Sickkids. Please, feel free to email me at nesaniei@yahoo.com.
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Post by Leslie on Sept 13, 2014 0:24:35 GMT
Shannon do you have an email I could connect with you!? My son was just diagnosed with lissencephaly
Lesliepiluso@gmail.com
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Post by Leslie on Sept 13, 2014 0:28:07 GMT
Anyone who is experiencing a child with lissencephaly could you please contact me
Lesliepiluso@gmail.com
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Post by Mody on Jun 3, 2015 13:21:17 GMT
My son has been diagnosed with lissencephaly yesterday he is 10 month old I don't know what to do I leave here in mississauga he was diagnosed at sick kid toronto could you please email me for some advice mody0422@yahoo.com
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Post by rhys2015 on Jul 11, 2015 16:02:23 GMT
ys, my 5 1/2 month old son, has been diagnosed with Rhys, my 5 1/2 month old son was diagnosed with Lissencephaly and Subcorticol Band Heterotopia this week. He suffers from IS and Generalized Tonic Clonic Seizures. We are still waiting the results from genetic testing to determine if it is the LIS1 gene but several Ped Neuro feel it is. I am in Brampton, Ontario. I definitely need to connect with other parents of Liss children. All our family and friends are very empathetic and try their best to give us support and comfort, but they just don't know what we are going through right now. I have joined a Facebook group, the Lissencephaly Network, which is helping too. My email is heather_risdon@msn.com.
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Post by Heidi on Mar 14, 2018 22:14:14 GMT
Hi Theresa, My name is Melissa. My son, Jesse, who is 3 years old was also born with Lissencephaly. We are from New Brunswick, Canada. You can e-mail me at melcle@nb.sympatico.ca Hi, I'm a new mom and my son was diagnosed with micro lissencephaly at birth! He is now 8 weeks old. We have so many questions. It would be great to be in contact with someone who is going through or has gone through this! I live in Newfoundland Canada. heidi89@hotmail.ca
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