Niño Víctima De Rara Enfermedad Mortal Escribe Una Emocional Carta De Despedida

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Cuando pequeño, Marshall Clark amaba correr y jugar al aire libre, ver sus videos favoritos y hablar con sus amigos. Le hacía feliz comer fresas y cupcakes. Sin embargo, durante los últimos tres años de su trágicamente corta vida, fue incapaz de hacer todo lo que amaba.

El pequeño fue diagnosticado con la enfermedad de Batten en 2013, una extraña y mortal condición degenerativa del sistema nervioso. Luego de 18 meses después de su diagnóstico, Marshall perdió la visión y sus habilidades motoras y de comunicación.

Su familia –especialmente su madre, Lara, y su abuela, Elsie- se quedaron a su lado cuidándolo y cubriendo sus necesidades.

Lara Clark with her son Marshall who has died of Batten Disease. See SWNS story SWHEAVEN; Tributes have been paid to a young boy from Plymouth who died following a three-year fight against a rare fatal disease. Marshall Dylan Michael Clark died peacefully in the arms of his mother, Lara Clark, and grandmother, Elsie Clark, on October 29. The brave seven-year-old, due to celebrate his eighth birthday on November 8, had spent the past ten months bed-bound at his ‘nana’s’ house as he continued to battle Late Infantile Batten Disease. He was diagnosed with the condition - a disorder of the nervous system - in September 2013, becoming one of only 24 children in the UK to suffer from the disease. Elsie described Marshall as a “beautiful, brave little boy”.

 

Ver como su terrible enfermedad lo iba destruyendo de a poco fue devastador, pero también les permitió saber lo increíblemente resiliente y positivo que era el pequeño Marshall.

Según su abuela Elsie, Marshall nunca lloró ni se rindió:

Marshall Clark who has died of Batten Disease - Pictured with nan Elsie. See SWNS story SWHEAVEN; Tributes have been paid to a young boy from Plymouth who died following a three-year fight against a rare fatal disease. Marshall Dylan Michael Clarke died peacefully in the arms of his mother, Lara Clarke, and grandmother, Elsie Clark, on October 29. The brave seven-year-old, due to celebrate his eighth birthday on November 8, had spent the past ten months bed-bound at his ‘nana’s’ house as he continued to battle Late Infantile Batten Disease. He was diagnosed with the condition - a disorder of the nervous system - in September 2013, becoming one of only 24 children in the UK to suffer from the disease. Elsie described Marshall as a “beautiful, brave little boy”.

 

Cuando no pudo volver a caminar, aprendió a gatear. Cuando le era difícil alimentarse por sí mismo usando tenedor y cuchillo, usaba dos tenedores para comer grandes bocados. E incluso cuando estaba confinado a la cama, incapaz de moverse o hablar, continuaba sonriendo.

Recibió todos los golpes de la enfermedad y siguió intentando salir adelante. Se caía al suelo unas 40 veces al día, por eso usaba un casco, pro siempre se volvía a levantar. Nunca se quejó ni se frustró por ello.

Marshall Clark who has died of Batten Disease - Pictured with nan Elsie. See SWNS story SWHEAVEN; Tributes have been paid to a young boy from Plymouth who died following a three-year fight against a rare fatal disease. Marshall Dylan Michael Clarke died peacefully in the arms of his mother, Lara Clarke, and grandmother, Elsie Clark, on October 29. The brave seven-year-old, due to celebrate his eighth birthday on November 8, had spent the past ten months bed-bound at his ‘nana’s’ house as he continued to battle Late Infantile Batten Disease. He was diagnosed with the condition - a disorder of the nervous system - in September 2013, becoming one of only 24 children in the UK to suffer from the disease. Elsie described Marshall as a “beautiful, brave little boy”.

 

Elsie además apunta al sacrificio de la madre de Marshall, quien lo cuidó al mismo tiempo que criaba a su hermano menor, Troy, de 2 años.

Marshall Clark who has died of Batten Disease - Pictured with nan Elsie. See SWNS story SWHEAVEN; Tributes have been paid to a young boy from Plymouth who died following a three-year fight against a rare fatal disease. Marshall Dylan Michael Clarke died peacefully in the arms of his mother, Lara Clarke, and grandmother, Elsie Clark, on October 29. The brave seven-year-old, due to celebrate his eighth birthday on November 8, had spent the past ten months bed-bound at his ‘nana’s’ house as he continued to battle Late Infantile Batten Disease. He was diagnosed with the condition - a disorder of the nervous system - in September 2013, becoming one of only 24 children in the UK to suffer from the disease. Elsie described Marshall as a “beautiful, brave little boy”.

 

Antes de que muriera, Elsie escribió una carta en Facebook a la familia y a los amigos que estaban preocupados por el niño. Esperaba capturar en ella el espíritu de su nieto, su resiliencia, su felicidad y su amor:

Marshall Clark who has died of Batten Disease - Pictured is an announcement about his death on his nans blog. See SWNS story SWHEAVEN; Tributes have been paid to a young boy from Plymouth who died following a three-year fight against a rare fatal disease. Marshall Dylan Michael Clarke died peacefully in the arms of his mother, Lara Clarke, and grandmother, Elsie Clark, on October 29. The brave seven-year-old, due to celebrate his eighth birthday on November 8, had spent the past ten months bed-bound at his ‘nana’s’ house as he continued to battle Late Infantile Batten Disease. He was diagnosed with the condition - a disorder of the nervous system - in September 2013, becoming one of only 24 children in the UK to suffer from the disease. Elsie described Marshall as a “beautiful, brave little boy”.

 

Queridos amigos

Este será mi último mensaje aquí porque cuando lean esto, estaré en el cielo. Está bien porque mi nana me ha contado todo sobre él y todas las cosas maravillosas que seré capaz de hacer allí. Habrá muchos toboganes y frutillas y cupcakes y seré capaz de correr de nuevo y ver videos.

Me preocupaba extrañar a la gente que amo, pero mi nana me dijo que el amor que la gente me tiene es tan fuerte, que parecerá que están junto a mí. Nana dice que he sido el niño más valiente de todos.

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Cuando la enfermedad de Batten me dejó incapaz de usar mi iPad o alimentarme o jugar, continué sonriendo. Nunca lloré cuando me caía o cuando no pude ser capaz de seguir comiendo y tuvieron que alimentarme a través de un tubo en mi pancita. Nana dice que simplemente aceptaba todo lo que me ocurría y seguía riendo por tanto tiempo como pude.

carta-nino-7

 

Y cuando ya no podía moverme o hablar o ver, me encantaba escuchar a mi nana leerme todos los mensajes que mis amigos me escribían.

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Todos ustedes han estado junto a mí y me han apoyado y amado, y quiero agradecerles desde el fondo de mi corazón por ello. Pero ahora debo despedirme. Estén felices por mí, porque ya no estoy atrapado en un cuerpo que no me dejaba disfrutar mi niñez. Ahora soy libre para hacer todas las cosas que tanto he extrañado. Mucho amor y besos para todos, vuestro Marshall.

Marshall Clark who has died of Batten Disease - Pictured with nan Elsie and grandad Mike. See SWNS story SWHEAVEN; Tributes have been paid to a young boy from Plymouth who died following a three-year fight against a rare fatal disease. Marshall Dylan Michael Clarke died peacefully in the arms of his mother, Lara Clarke, and grandmother, Elsie Clark, on October 29. The brave seven-year-old, due to celebrate his eighth birthday on November 8, had spent the past ten months bed-bound at his ‘nana’s’ house as he continued to battle Late Infantile Batten Disease. He was diagnosed with the condition - a disorder of the nervous system - in September 2013, becoming one of only 24 children in the UK to suffer from the disease. Elsie described Marshall as a “beautiful, brave little boy”.

 

Marshall será extrañado y amado para siempre por sus amigos y familia, y será recordado por su valentía frente a una enfermedad tan destructiva.

Si quieres ayudar a encontrar una cura para la enfermedad de Batten, puedes hacer una donación en la fundación Beyond Batten Disease.

 

¡Comparte esta bellísima y emocionante carta!

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