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kyliebewley

UNIQUE rare chromosome charity

Hiya I was wondering if any of the members on here are members of UNIQUE?
As a member myself and being a mother and full time care to a child with a rare Chromo disorder UNIQUE is quite close to my heart and so I was wondering if there were any parents like myself who would like to help me raise awareness of the charity in the local area and maybe even help me do a fund raising event Smile
kyliebewley

Please find below links to UNIQUEs website and a YouTube video I made about my son (apologies but not every device can play it)


http://www.rarechromo.org/html/home.asp

Video Smile
http://youtu.be/A2GAcHlbQBQ
martyn142

That's a pretty humbling video Kylie. Dowie sounds a fantastic kid. And he's lucky he found Mr Mushtaq.
kyliebewley

Thank you Martin, yes he is very very lucky to have Mr Mushaq, we loved in London when he was born which is why he gets treated at GOSH, we have been offered to transfer to Bristol but we want to keep Imran Mushtaq, I've googled him and he's got a fab reputation Smile x
martyn142

My daughter has just started medicine at Manchester and hopes to go into paediatrics. I'll show her the video and the website.
kyliebewley

Smile thank u Martin, if she ever has to do any papers on Genetics she might find it all quite interesting.... There is a new booklet being made at the moment about Mosaic Trisomy 8 which I'd be happy to pass on Smile x
martyn142

Thanks Kylie. She's obviously at a very early stage at the moment but, as I said, I will tell her about Dowie's condition and the paper you mentioned might well be useful when she comes to study genetics. Thanks again.  Very Happy
martyn142

I emailed Bethan the links. Here's what she replied

"That video was really good. I actually studied chromosomal numerical abnormalities a couple of weeks ago and we had to focus on trisomies. Trisomy 8 wasn't one we covered but it was really interesting to see xxx"
kyliebewley

Smile I seen that Bethan had seen it as she left me a lovely comment Smile thank u for sharing the video x

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