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lor
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Joined: Feb 2008 /
Posts: 6
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Post Date: 22 Feb 2008, 05:30:11
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My son who is seventeen months old was recently diagnosed with Perisylvian Polymicrogyria. I am wondering is there any one else in Ireland with this condition. Please, Please someone reply...... |
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TLD
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Joined: Jan 2008 /
Posts: 3
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Post Date: 24 Feb 2008, 09:08:22
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So sorry to hear that. You must be shock. We are not affected by this condition but my only advice to you is to see if there is a support group in the UK.
I found this link to a book written by a father whose daughter suffers with the disease. It is called Schuylers Monster.
http://www.****-tootin.com/cbps.html
Take care.
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Edited: 24 Feb 2008, 09:10:47 |
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TLD
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Joined: Jan 2008 /
Posts: 3
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Post Date: 24 Feb 2008, 09:12:06
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Sorry. The first part of that web site address has been bleeped out. The missing word is barn but with a d not a b. If you get my meaning. |
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Edited: 24 Feb 2008, 09:12:53 |
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lor
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Joined: Feb 2008 /
Posts: 6
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Post Date: 25 Feb 2008, 08:18:08
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To TLD,
Still getting the hang of the way this forum works.
Thanks a million for that website address.
I have come across a few support groups in England, still trying to find families in Ireland. I am in contact with a family in Kildare and its a great help. Would like to get in contact with another if possible.
Thanks again!!
Lor |
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Loulou
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Joined: May 2008 /
Posts: 2
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Post Date: 08 May 2008, 11:03:33
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Hi there,
Perhaps you should try contacting the Genetic and Inherited Disorder Organisation (although I think they've changed their name to cover Rare Disorders now).
Genetic and Inherited Disorders Organisation
Carmichael House,
North Brunswick Street,
Dublin 7
Telephone: 01 2693186.
Fax: 01 2692748
Email: gido2002@hotmail.com
Also Rehab Care did some work on Rare Disorders so they might be a good contact.
Best of luck.
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Loulou
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Joined: May 2008 /
Posts: 2
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Post Date: 19 May 2008, 09:44:46
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I would say Contact a Family would be their best bet.
Either their helpline 0808 808 3556 or email http://www.cafamily.org.uk/helpline.html#pro-forma
The condition is listed on the Contact a Family Directory http://www.cafamily.org.uk/home.html To get in contact with other parents the contact a family website has a section that facilitates finding peer support www.makingcontact.org. This is UK based but families internationally contact it. caroline |
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bundi
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Joined: Jul 2008 /
Posts: 1
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Post Date: 17 Jul 2008, 07:07:55
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Hi My name is Alan foley and my son Will who is 4 months old has been diagnosed with the same condition. You probably wont see this post but its worth a shot. We live in Meath. It's a long story but if you need to chat about it email me at afoley72@gmail.com. As you know it is very rare and extremely complicated. Still finding our way. |
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vits
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Joined: Oct 2008 /
Posts: 1
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Post Date: 29 Oct 2008, 07:45:29
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Hi,
My son who is 15 months old now, has been diagnosed with this condition when he was 3 months old. We were told that there is a great variation in children with this condition and that they don't know how much our boy is going to be affected. It has p***ed a long time since he was diagnosed, and , although it is really hard for us to accept the situation, we love him very much and think that he is a wonderful little boy. We live in England and we didn't meet anyone else that has a child with this condition. I would like so much to talk to people that are in the same situation as us. |
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lor
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Joined: Feb 2008 /
Posts: 6
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Post Date: 14 Nov 2008, 09:01:37
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Hi,
My son is just gone two now his name is Dylan. He is a fantastic little fella and we love him more than anything, but as you know days are hard!
If you would like to mail me please do, lormcquinn@hotmail.com
Regards
Lorraine |
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ger
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Joined: Aug 2010 /
Posts: 1
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Post Date: 31 Aug 2010, 12:23:32
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Hi, my daughters name is Elise, she is 21 months old, and was diagnosed with polymicrogyria a few months ago, she is now taking seizures, i am finding this very difficult to cope with, as she is very beautiful, and a very happy baby, so watching her going through this, is very hard for me to cope with, I feel anxious all the time, she has just started walking, and i find myself following her every move, incase something happens to her.
I was wondering if anyone else is experiencing this, or even know. what i should expect from Elise, I live in Scotland, and would love to speak to another parent, who is experiencing this. |
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