Adalia Rose, supporter or not?
✿Britt ❤'s Steven Tyler✿
2012/07/27 03:46:53
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66 votes
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74% | ||
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23 votes
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26% | ||
Adalia Rose is a little girl with a fatal genetic condition called Progeria. The word Progeria comes from the Greek progeros meaning ‘prematurely old’. The earliest Adalia Rose threads began popping up on /b/ sometime in 2011. They weren’t malicious-- lots of the photoshopped images in the threads were just cute. It eventually reached websites like Twitter, Facebook and Tumblr in early 2012. 
Progeria is a rare genetic condition that produces rapid aging in children. Progeria affects children and gives them an appearance of accelerated aging. Children with Progeria are born looking healthy. When they are about 10 to 24 months old, features of accelerated aging start to appear. Progeria is a rare condition that is remarkable because its symptoms strongly resemble normal human aging, but occur in young children. It usually is not passed down through families. Rarely is it seen in more than one child in a family. They become thin and start to lose hair and their face grows abnormally. There is no specific treatment for progeria.
Adalia Rose is a courageous little girl who never, ever gives up. What her heart truly desires is a "real" wig. Adalia loves to play dress up and with a regular synthetic wig, you can't style it and it doesn't feel natural. Adalia used to have hair as an infant but because of the disease it causes hair loss, and at only 5 years old, she knows the difference between fake and the real thing! Adalia's mother, Natalia is determined to shave her own head just like her daughters. She is not only willing- but she's excited to become bald with her babygirl and plans to send her locks to "Caring and Comfort" to create a personalized wig for Adalia. The only thing between her and this vision is the cost of a human hair wig = $1,700. To weave every strand of human hair is an expensive process. Although we have reached our initial goal for the wig, we are still taking donations so that Adalia can participate in the Progeria Research Foundations clinical trials without any financial difficulties.Now that was a good sum up of the information that you will need to understand the Adalia story. But here is what i am wondering, Is her mom taking it too far with the publicity? I have been seeing a good amount of posts and videos saying that the mom posting up too many videos and photos of her for more donations to the family and not as many to the actual progeria research center. Weather that is true or not i have no idea cause i am not in charge of their bank accounts. Some people seem to get upset if the mom puts up a lot of videos of her singing or dancing and photos of her having fun, personally i see nothing wrong with that, its a fatal disease and the years left are more than likely not many, savor the memories. that could be one reason why all the videos and photos. Even yet i have run across many rude mean photos of her being made fun of. photos like these.
Have people forgotten that's a kid that they make fun of when making those mean heartless edits. It's not right at all if you ask me, making fun of the less fortunate is never right. She never chose to be the way she is, that is why it is so wrong to make fun of her they way that some people do. Hateful facebook pages are popping up as well and its pretty bad when someone would take the time to make it into a page of hate, pages like this one. http://www.facebook.com/deathtotheprogerianmenace
Here is how i see it, a way to make some of these issues stop, issues like people making rude videos and photos of her. The mom needs to stop over publicizing her and posting so many photos, I support the fact that she loves her daughter and is trying to be supportive, but she is causing more problems than solving. for every photo of her daughter she posts, there is a bored jerk just thinking of some rude way to edit it into a cruel joke. And the people who think the rude edited photos are funny, imagine this, you had a kid that way, would you want them to get made fun of? Put yourself in her shoes and imagine how heartbreaking that must be for a kid to know that people who don't even know her are making fun of her for no reason. Would you walk up to a kid in a wheel chair and laugh and point and say, haha i can walk and you can't. nice rims, walk this way please. No. At least most people would not. If you were face to face with Adalia would you be able to say, you are ugly, your are an alien, you are weird and creepy. No, most likely not. Then why make and laugh at mean photos about a CHILD with a DISABILITY? Look at how some people are acting towards the less fortunate and think, is this how someone should be treating another person?http://supportadaliarose.blogspot.com/
http://stopmakingfunofadalia.tumblr.com/
http://stopmakingfunofadalia.tumblr.com/
I don't want to see pictures of a dying little girl even if they are both funny and disturbing at the same time. It's just too morbid for me all around, and I wish we had better genetic screening and counseling available to everyone and less of a culture of hatred for science so that we could help limit the number of children and parents who have to go through all of this.