<div>HISTORIA DE CHLOE  &amp; CHLOE AND HER FIGHT (read de ENGLISH VERSION just below)
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<div>Soy Jorgelina pero me llaman Koki, he creado esta página para buscar fondos para ayudar a Chloe , mi peque, quien sufre una Enfermedad Rara totalmente desconocida, al día de hoy solo se conocen 12 casos  en el mundo, ella es el único caso conocido en España, es una niña muy dulce y llena de ilusión por la vida y con un corazón ENORME, si alguien merece un futuro es ella.
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<div>De la enfermedad sabemos muy poco, su Origen fue descubierto en Febrero del 2018 y el responsable es un gen llamado VPS13D, es una enfermedad rara progresiva e invalidante, si no la detenemos las consecuencias serán terribles.
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<div>Los daños son irreversibles y afectan a su sistema muscular y nervioso, Chloe tiene actualmente un grado de discapacidad reconocido del 75%.
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<div>Sus caderas y piernas ya están muy afectadas, su habla y deglución también, su día a día es muy difícil y su futuro peor, la tetraplejia es su destino y el camino será lento y doloroso...quién no haría lo imposible por detenerlo!?
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<div>Después de 7 años buscando ayuda y respuestas en todo el mundo sin descanso y de ver como tantas puertas se cerraban,  el Instituto Germans Trias i Pujol de la mano del Dr. Matilla, está creando un Proyecto de investigación para detener el proceso neurodegenerativo de la enfermedad que afecta a Chloe, su equipo trabaja con esmero para ayudarnos pero necesitan medios. Se coordinan con el Dr. Posadas y el Instituto Carlos III, lo que descubran servirá  también a otras personas que sufren los estragos de las enfermedades raras.
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<div>Todos los fondos aquí recaudados van directamente al centro de investigación IGTP ( Fundación Instituto de Investigación en Ciencias de la Salud Germans Trias i Pujol)  EL DINERO NO VA A NUESTRA CUENTA CORRIENTE en un ejercicio de transparencia, espero de verdad que puedas ayudarnos!!
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<div>En estos momentos el Dr. Matilla y su equipo están terminando de diseñar el proyecto, pero estiman que el mismo tendrá un coste aproximado de 200.000€ y una duración de 2 años, nuestro desafío es conseguir esos fondos.
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<div>Nuestra primera meta es recaudar 25.000€ porque con este importe ya se puede inciciar el proyecto de investigación.
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<div>Esta es la única esperanza que tenemos para poder salvar a Chloe y porder ayudar a los otros niños que sufren los estragos de esta enfermedad,  solo con vuestra ayuda será posible conseguirlo, gracias!!
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<div><a href="https://investigacionparachloe.org/" target="_blank" class="" rel="nofollow noopener noreferrer">https://investigacionparachloe.org/</a>
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<div>CHLOE'S STORY (English version)
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<div>Chloe suffers a Rare Disease totally unknown, to date only 12 cases are known in the world, she is the only known case in Spain, she is a lovely sweet girl full of hope and with a HUGE heart, if someone deserves a future it is her. We know very little about the disease, its origin was discovered in February 2018 and the responsible one is a gene called VPS13D, it is a rare progressive and invalidating disease, if we do not stop it the consequences will be terrible.
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<div>The damages are irreversible and affect her muscular and nervous system, Chloe currently has a recognized degree of disability of 75%. 
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<div>Her hips and legs are already very affected, her speech and swallowing too, her day to day is very difficult and her future worse, the tretraplejia is her destiny and the road will be slow and painful ... who would not do the impossible to stop it!?
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<div>After 7 years looking for help and answers throughout the world without rest and seeing how many doors closed, the Germans Trias and Pujol Institute, led by Dr. Matilla, is creating a research project to stop the neurodegenerative process of the disease that affects Chloe. They coordinate with Dr. Posadas and the Carlos III Institute, what they discover will also serve other people who suffer the ravages of rare diseases.
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<div>All the founds goes directly to the research center Fundación Instituto de Investigación en Ciencias de la Salud German Trias i Pujol, this was our decition in order to offer the highest guarantees of the destination of the funds collected.
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<div>The cost of the project is estimated in approximate € 200,000 and a duration of 2 years, our challenge is to get those funds. This is the only opportunity that we have today to save my little girl, only with the help of many people it will be possible to achieve our dream...offer her the chance for a life.
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</div><img class="m-text-editor-image" alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/76676661_1700562530624200_r." width="100%" />
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JULIO MORENO COCO

Anonymous

Mark Trenta

Maria Antonia RODRIGUEZ TATO

Abdel Nasar Benameur Soler

Franklin Henderson

Juan Jose Figueroa

Kelly Sandoval Pareja

Daniel Muñoz Ruiz

Manuel valentin

Yolanda Rodríguez Díaz 

manuel garcia torres

Marian RT

pernille Otzen

Ayudanos a detener la enfermedad grave de Chloe

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Ayudanos a detener la enfermedad grave de Chloe

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