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Fozzie Bear
08-31-2010, 12:02 AM
I've had a very hard time concentrating on anything the last few days. Found out that my niece has Rett Syndrome. We've feared for some time that she hasn't been developing normally, but the reality still has been jarring. Sometimes I get so damn angry because it seems so unfair that this sweet, beautiful child, who has barely begun her life, essentially may be a prisoner in her own body.

I've been trying to be proactive. Looking up as much information as I can. Trying to see some hope in the recent research on Retts. The International Rett Syndrome Foundation is trying to win a grant to expand on some promising research. If any of you have a few minutes to spare, could you send a vote that way? Much thanks.

http://www.refresheverything.com/rettresearchtoreality

Bailey_
08-31-2010, 12:16 AM
Fozzie Bear - I just wanted to say how sorry I am to hear about the diagnosis your niece has been given. I have a beautiful niece who I love very much and I can only imagine the pain that you and your family are feeling. I have also worked with girls who have Rett Syndrome and their families and it is a very difficult road to walk. It is ok to be angry - denial, anger, sadness are all a part of the process of coming to terms with any difficult diagnosis. Bless you for being proactive, it will be helpful in making sense out of something that seems so senseless most of the time. I just want you to know that you are in my thoughts and I wish the best for you and your family.

Fozzie Bear
08-31-2010, 12:40 AM
Thanks, Bailey. Since childhood, I've been trained with the "men don't cry" mentality, but I think I've broken down more times this week than I have in the last fifteen years. Good thing I have my own office at work. I helped raised my niece the first 15 months of her life; in some ways I've felt like parent number 3.

milanessa
08-31-2010, 12:50 AM
(((Fozzie Bear's niece))) (((Fozzie and family)))

Grave illnesses hit all families hard but when it's a child...:(

Anita18
08-31-2010, 12:55 AM
((HUGS))

It's great that she's surrounded by such caring people. Things will be all right as long as you have that, despite the illness.

Fozzie Bear
08-31-2010, 12:45 PM
Thanks, everyone for your support.

In 2007, scientists were able to reverse Rett Syndrome-like symptoms in mice. Hopefully research will progress to find a cure for my niece and all these little girls and families who are devastated by this illness. Please do vote when you get a chance: http://www.refresheverything.com/rettresearchtoreality The proposal needs to be in the top two to win the grant.

Nan
08-31-2010, 03:58 PM
A co-worker has an 18-year-old step-daughter with Rett Syndrome. She is a beautiful, sweet girl. I'll pass this on to her.

IceAlisa
08-31-2010, 06:52 PM
Hoping for the best for you and your family.

Ania
09-01-2010, 01:53 AM
I am so sorry this happened to your family. I just voted for IRSF proposal.
I will keep your niece, her parents, and you in my thoughts.

Fozzie Bear
09-01-2010, 02:52 AM
Thank you all for your kind words. Thanks Ania and Nan for spreading the word and voting.

I hate that all these charities have to fight for grant money. So many deserve it, and need it. But I guess it is what it is.

Anita18
09-01-2010, 03:01 AM
Thank you all for your kind words. Thanks Ania and Nan for spreading the word and voting.

I hate that all these charities have to fight for grant money. So many deserve it, and need it. But I guess it is what it is.
Everybody has to fight for grant money. (My boss is currently writing this year's grant proposal. He's been working on it for two months now. :lol: ) Even when a charity gets grant money, they can only give it to the chosen labs for a limited amount of time. Research is expensive and money is hard to come by.

I work in a cancer research lab and most of our money comes from the NIH, i.e. the government i.e. your tax dollars. :P I'm pretty sure all of the money going to cancer research through charities only pays for lab startup costs for the first couple of years, if that. Otherwise it's back to the grind writing grant proposals to beg money from the government...

Fozzie Bear
09-01-2010, 03:40 AM
Everybody has to fight for grant money.

I know. I was reacting to the voting frustration. I feel guilty looking at the Pepsi site and thinking "Damn it! They're ahead of us." It's not a good feeling being pissed off at a charity that's trying to cure Juvenile Myositis.

Simone411
09-01-2010, 04:01 AM
Fozzie Bear, I've tried to vote twice but my browser keeps freezing up on that site. I'm using IE 8 and not sure what the problem is.

zhenya271
09-01-2010, 04:04 AM
Fozzie Bear, I've tried to vote twice but my browser keeps freezing up on that site. I'm using IE 8 and not sure what the problem is.

I'm having the same problem!:(

Simone411
09-01-2010, 04:08 AM
I'm having the same problem!:(

It's weird because it takes about a couple of minutes to clear up. It freezes again if you try to move the mouse around. I hope the problem clears up soon. :(