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Children wit Progeria mostly get about 12 years old, but at that age their bodies are comparable to a body of a 80 or 90 years old person. With everything that belongs to it, such as arthrose etc. They mostly die from a heart-attack. The crual thing is that these children are mentally totally normal. So they notice everything: they look different, the staring of people etc.
Once a year all children of the world, who suffer from Progeria (about 40), meet in America, in Florida. It's very important for the children to spend time together and to see other children like them. This is aranged by the Sunshine Foundation. A foundation for incuarable sick children.
In Europe we have The Progeria Family Circle. They want a once a year meeting in Europe too. The meetings are very nice but very intense. You are very aware of the death and at the same time you live much intenser. It's very special to sentence this. I think exactly this is what makes the children so charm and intense. I really love them, it seems like they eat life. I think, whether they're told or not, the children know they aren't long on this earth. So they want to see as much as possible of life. It doesn't matter whether it's positive or negative, because it’s all life. I hope I could reach that point once myself!
For more information about Progeria visit:
www.progeriaresearch.org/
en.wikipedia.org/wiki/Progeria
www.hayleyspage.com/progeria.htm
www.sunshinefoundation.org
or type in progeria at goole
photo of Burcu and me is taken by Benno Neeleman
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Posted by Liliva on 2008-03-13 16:16:43 | Rating: | Views: 62
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