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| Poor baby with PHACE Syndrome - 24 Oct 09 Fundraising http://byap.backyardmagazines.com/forum/viewtopic.php?f=5&t=6315 |
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| Author: | ivansng [ Oct 12th, '09, 10:02 ] |
| Post subject: | Poor baby with PHACE Syndrome - 24 Oct 09 Fundraising |
Hi there, Recently, my wife and I became acquainted with a family through some group therapy sessions. But that's another story. The story here is that a 6 months old baby has been diagnosed with a very very rare and uncommon medical condition known as PHACE Syndrome. It is so rare that it took some time for the medical professionals in Australia to come up with the diagnosis. Well the bad news is that there is no treatment available in Australia. http://jaydasphacejourney.blogspot.com/2009/09/what-is-phace-syndrome.html The poor baby will need to travel to Texas, US for treatment. The family has setup a blogpage that you can go to and have a read, but the main point is that they are currently raising funds for the trip and the treatment. http://jaydasphacejourney.blogspot.com/2009/09/fundraising.html As part of the fundraising, they are also having a saugage sizzle shortly with a silent auction. http://jaydasphacejourney.blogspot.com/2009/09/sausage-sizzle.html Also selling reminder bands... http://jaydasphacejourney.blogspot.com/2009/09/reminderbands.html They are also accepting direct donations to an Australian bank account. So if you are keen to help or know others that will be keen to help this young baby in her life's journey, please do try to contribute in one way or another (ie. direct funds, stuffs for auctions, etc). If you wish to discuss your ways of helping them, please go to the About Me link, there is an email link where you can send them an email directly. AP members in Texas, USA may be able to help in other ways... making them feel welcomed, etc?? Please do forward this to anyone who you think may want to help in some way. If you receive this from someone but do not wish to. Apologies, just delete the email/post. But this is a real case and a real family in Perth, Western Australia, and it is not another scam. Thanks for your time. |
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| Author: | ivansng [ Oct 22nd, '09, 07:33 ] |
| Post subject: | Re: Poor baby with PHACE Syndrome - 24 Oct 09 Fundraising |
Some additional information has been added to the blogpage. Go check it out. http://jaydasphacejourney.blogspot.com/2009/10/local-celebrity.html But overall, just a reminder to those who wish to help by coming to the saugage sizzle, it is this Saturday 24th Oct 09. See you there. |
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| Author: | ivansng [ Oct 22nd, '09, 07:42 ] |
| Post subject: | Re: Poor baby with PHACE Syndrome - 24 Oct 09 Fundraising |
Just in case, here's the venue details. VENUE:Ashburton Shopping Village,Ashburton Drive,GOSNELLS WA. DATE:24th October 2009 TIME:11:00am-2:00pm |
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| Author: | Outbackozzie [ Oct 22nd, '09, 08:42 ] |
| Post subject: | Re: Poor baby with PHACE Syndrome - 24 Oct 09 Fundraising |
Just had a read of the blog and some webpages, looks like they are pretty lucky to have a relatively mild case so far....does not seem like a nice thing to have. |
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