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| the neuro foundation; genes etc | |
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| Tweet Topic Started: Oct 16 2012, 11:28 AM (443 Views) | |
| zico | Oct 16 2012, 11:28 AM Post #1 |
Ivan Golac
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Hi all well better tell you that my 2 year old daughter and my partner have got a genetic condition which causes lumps to form on ends of nerves. Im at my wits end. As if a lump grows on optic nerve they will go blind. If one grows in her arm it will impair movement if they grow in her brain then its goodnight. As there is no cure im just spreading the word..but please if you can help get in touch x |
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| findus | Oct 16 2012, 12:06 PM Post #2 |
Jerry Kerr
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http://en.wikipedia.org/wiki/Neurofibromatosis#Treatment Sounds awful  I'm not sure how we can help, but according to that link counselling is available to you and your family.
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| Naebody | Oct 16 2012, 05:25 PM Post #3 |
Twat
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Aw, kid, I'm sorry. The most I can offer here is a platitude. Today is more important than tomorrow. And, today, everything's fine. Do everything you can to make the most of today. Don't let it be ruined by all the potential tomorrows. |
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| zico | Oct 16 2012, 05:32 PM Post #4 |
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Ivan Golac
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We have had all the counselling we can stomach. What I aim to do is to raise its profile. But people with it tend to shy away as the tumours it causes are unsightly. I just feel helpless |
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4:37 PM Jul 13