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 See Jakes TV Documentary (public forum)

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LisaF
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Number of posts : 329
Age : 51
Location : Croydon, UK
Registration date : 2008-01-09

PostSubject: Re: See Jakes TV Documentary (public forum)   Fri Apr 11, 2008 5:47 pm

Hi Jennifer

Thank you so much for the lovely words and I'm so glad you logged on. Even though Sydney is still so young your own experiences are going to be just as valuable to us all as those we can share with you. I hope you'll log on regularly and keep in touch, I know the families here will provide all the support they can to help you now and in the future.

If you would like me to include some pictures of Sydney in the gallery send them by e.mail and also if you have one of yourself with Sydney I can include it against your posts. You can send them to me at lcflint@orbic.co.uk

Please feel free to call me anytime for a chat on: 00 44 208 654 1090 (just a reminder i'm six hours in front of you!!! Sleep )

With such a rare disease it's nice to know we are here for each other!

Best wishes to you and your family and I bet Sydney's sister will be the best big sister ever queen
Lisa
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jbriley

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Number of posts : 69
Age : 45
Location : usa
Registration date : 2008-04-10

PostSubject: Re: See Jakes TV Documentary (public forum)   Fri Apr 11, 2008 4:11 pm

Lisa,
I watched Jakes' story. I want you to know how glad I am that you contatced us. It has given me the courage to go on the internet and face the things I didn't want to see. I am so inspired by Jake and by you. It makes me a little more optimistic and gives me more hope than I had. Jake is an exceptional child. You are an exceptional Mom.

Jennifer Briley Mother of Sydney Claire Briley
Diagnosed April 1, 2008
USA
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LisaF
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Number of posts : 329
Age : 51
Location : Croydon, UK
Registration date : 2008-01-09

PostSubject: See Jakes TV Documentary (public forum)   Fri Jan 25, 2008 8:07 am

You may like to see Jake's story which was shown on UK Television a couple of years ago. The video is in two parts and in total about 17 minutes long. The story explains how Jake's quality of life improved as a result of being correctly diagnosed with AADC, sadly this is not the case for most children living with this devastating brain disease.

You can post your comments here or you can get involved by visiting our 'fundraising forums' and let us know how you can help raise the much needed funds for AADC Research. Although Jake is succesfully treated with medication he is be no means cured of AADC, he still suffers symptoms of the disease and has also been diagnosed with autism, some of his drugs have side effects which could proved fatal. BUT...this is still a vastly improved state compared to most families who have children with AADC...no amount of medication has helped their situation and sadly on occasions we have to report a child losing their battle with the disease. The average age of survival is reported to be 5 years of age for children with AADC living in Taiwan.

If you can't get involved with fundriasing but would like to make an on-line donation you can do this by visiting us at www.justgiving.com/aadc.

Thank you for watching and supporting our worthy cause.

The AADC Research Trust

Part One

[flash][/flash]

[flash][/flash][/flash]

Part Two

[flash][flash]


Last edited by LisaF on Mon Aug 17, 2009 1:53 pm; edited 1 time in total
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