Autor: Ferraz | Publicado: 2016-07-11T16:55:00-07:00

<!--[if gte mso 9]>
 
  
 
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<![endif]--><!--[if gte mso 9]>
 
  
 
<![endif]-->






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NUESTRA&nbsp; PRINCESITA&nbsp;



. Se nos ha ido un pequeño ángel...









Filha de Juan
Carrión y Naca Eulalia Pérez de Tudela, presidentes de la Asociación de
Enfermedades Raras D´Genes y Asociación Nacional de Familiares y Afectados de
Lipodistrofias,, ela foi diagnosticado
com o este terrível mal Depois de exames genéticos,
uma médica no Hospital de la Virgen de Arrixaca de Murcia diagnosticou a
menina, à época com menos de dois anos, com lipodistrofia congênita de
Berardinelli (também conhecida como "Síndrome de Berardinelli-Seip")., e, desde então, seus pais deram corpo e
alma não só se preocupam, mas foram a luta pela investigação destas doenças. a
D¿Genes Association, que ele fundou, (Federação Espanhola de Doenças Raras). Graças
a eles, Totana&nbsp; tornou-se um marco da cidade nesta cruzada e já recebeu quatro
vezes e o Congresso Nacional para as Doenças Raras.

A vida de Celia
foi curta, mas sem dúvida ela deixou uma semente muito importante para fazer
avançar os contras de combate às doenças raras. Obrigado, `princesita¿,
descanse em paz

Celia morreu em 2012, aos oito anos.&nbsp;



Tivemos &nbsp;a oportunidade
de&nbsp; conhecer esta historia , através de
um grande amigo da família da menina , que nos pediu para fazer um desenho com
13 mil pregos&nbsp; da Menina Celia. Temos por
costumes imortalizar pessoas em&nbsp; painéis pintado
com &nbsp;dezena de milhares de pregos , &nbsp;Ferraz utilizou aproximadamente 400 mil
marteladas , e aproximadamente 14 mil pregos para fazer sua arte, um lindo
quadro com a Imagem do rosto da menina Celia .&nbsp;






















&nbsp;
























Não Tive a oportunidade de conhecer &nbsp;A
menina Celia ainda Viva , mas me emocionei &nbsp;muito &nbsp;através
&nbsp;de um vídeo &nbsp;que a Vi . &nbsp;http://www.laverdad.es/murcia/v/20110722/region/enigma-celia-20110722.html







&nbsp;O diretor da empresa farmacêutica BioMarin em Espanha e Portugal, Thiago Barros, apresentado a Juan Carrion e Naca Eulalia Perez de Tudela, presidente da Associação de doenças raras D'Genes e Associação Nacional de Famílias e lipodistrofias afetados, respectivamente, uma imagem bonita de um retrato de sua filha, precisamente nomes do Centro Multidisciplinar "Celia Carrion Pérez de Tudela".























Historias &nbsp;como estas Da
&nbsp;menina Celia de &nbsp;Totana, uma pequena cidade no sudeste da
Espanha, bem como &nbsp;&nbsp;o Menino Marco de Portugal , nosso Querido Dudu Prospero de&nbsp; Guarulhos Sao Paulo&nbsp;&nbsp; Brasil , entre outras tantas&nbsp; que não conhecemos , &nbsp;e que nos fazem parar e a Refletir muito , que
não estamos aqui nesta terra Apenas para Viver.&nbsp;



&nbsp;O artista :&nbsp; Miinha &nbsp;ideia é inspirar o sentido de unidade em todo
o mundo, Sozinho vamos mais Rápidos , &nbsp;Porem
Juntos&nbsp; Vamos Mais Longe .. &nbsp;&nbsp;Relata o Artista Plástico &nbsp;“Emocionado “





Aqui &nbsp;um Pouco Sobre Nuestra
Princesita 

http://www.bbc.com/portuguese/geral-36463057