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Post by michelle on Dec 18, 2009 13:51:47 GMT -5
Hi, my son Zayne has the late-infantile. Symptoms started around 13 months old. I would like to talk about the stages my son has gone through and his present stage. He is 10 yrs. old now. He will be 11 on Valentines day. Is there anyone's sweet child that is around the same age and with late-infantile? Hope all of you and your sweet angels are having a wonderful holiday season. Thank you.
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Post by Trichelle Watkins on Feb 18, 2010 11:39:18 GMT -5
Our daughter had LINCL and has passed away but you are welcome to call or email me and I would be happy to talk with you. 517-449-8551 or jacobwatkins@msn.com
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Post by Wendy Weaver on Jun 15, 2010 22:40:02 GMT -5
I am unsure of my sons type but he is 8 going to be 9 in Sept. if you ever want to chat. They think he has a infantile form but not sure he was just diagnosed with Batten's in Sept. 09 because it is so rare and I had alot of doctors that wouldn't listen. They think he has a late age onset. He is such a sweet little boy though. I am still new to all of this but I like to swap stories and help and be helped. my name is Wendy my son is Austin who is 8 and his little brother Richard who is 6 they don't think he has it but no test has been done yet. I had never even heard of this until he got diagnosed. You can most likely find me on Face Book my email is Butterflie8031@yahoo.com but I hardly check it. I do have a myspace but I really never get on that just like once a month. There are a lot of Batten's parents on my friends list on face book we chat and post stuff all the time and help each other out. Hopes this helps Good luck bye
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Post by Peggy DiCapua on Jun 17, 2010 19:29:11 GMT -5
Hi. My son Christopher had LINCL, and passed away at age 8. I remember many stages and issues very well. If you ever need to talk or have questions, I would love to speak with you. 732-627-9459 or email me via the www.metronynjbdsra.org website. I am the NY/NJ chapter president. Peggy
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Post by butterflie on Jun 20, 2010 10:05:31 GMT -5
I just found out my sons type. He has Late infantile he has the NCLc5 form. It is called the varient form. He will be 9 this year. He is really doing well from what they say. He does not have one thing more gone than another. I would love to connect to all of you. I am also on face book and talk to alot of other parents on there too. My email is Butterflie8031@yahoo.com. Nice chatting. bye
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