November..Aperts Syndrome Awareness Month

[BTS1022]

In the memory of my first born child I have declared November my daughters birth month as Aperts Syndrome Awareness Month. I have created a ribbon for friends and family to put on their page, Avatar, myspace, blog ect..

Aperts Syndrome is undetected until birth. Children rarely survive this genetic disorder due to internal issues with the heart, brain and kidneys.

For more information on this disorder you can google teeters page....or see the wikipedia definition.

[Aussie1222]

Hello,

I am so sorry to hear that your child has passed.  I think it is wonderful that you are raising awarness about this rare, but terrible disorder.  I live in Pennsylvania, and let me tell you - November is one of the most beautiful months.  I think November is a wonderful time to remember your child and all of the others with this affliction.

I know it has been a long time since this post, but I am trying to gain information about Aperts syndrome, as a friend of mine just had a baby with this affliction.  I would like to get started immediatly with helping them however I can.  So what I am wondering - from someone who has unfortunatly been there - how can I help?  What are things they are going to need.  Will they need to make adjustments to their home to care for their baby, will they need a full time nurse, will they be spending a lot of time at hospitals and need hotels a lot, will they need family therapy, etc.?

Is money the best way to help?  What can I do for them to relieve them - some how?

Both parents work for our local school district, and we are fortunate to have a very tight nit community - so I am sure if we all work together we really can make some kind of difference, I just don't know where to start.  I'm sorry to ask someone who has lost a child for advice, but I think you would know better than anybody what hardships lie ahead for my friends.  And I can only hope that with your advice we will be able to support them in their time of need.  Any advice would be greatly appreciated.

Thank You,
Dana

[spade22]

Thank you for posting this to raise awareness.