{"id":3894,"date":"2017-06-08T16:42:27","date_gmt":"2017-06-08T16:42:27","guid":{"rendered":"https:\/\/lpfch.org\/mycah-lost-her-4-year-old-daughter-to-dipg-now-shes-fighting-back\/"},"modified":"2024-02-16T20:53:41","modified_gmt":"2024-02-16T20:53:41","slug":"mycah-lost-her-4-year-old-daughter-to-dipg-now-shes-fighting-back","status":"publish","type":"post","link":"https:\/\/lpfch.org\/es\/impact-stories\/mycah-lost-her-4-year-old-daughter-to-dipg-now-shes-fighting-back\/","title":{"rendered":"Mycah perdi\u00f3 a su hija de 4 a\u00f1os por DIPG. Ahora est\u00e1 luchando."},"content":{"rendered":"

Cuando Mycah Clemons, una madre, perdi\u00f3 a su \u00fanica hija, Maiy, de 4 a\u00f1os, a causa de un glioma pontino intr\u00ednseco difuso, un tumor cerebral poco com\u00fan e inoperable que afecta principalmente a ni\u00f1os, decidi\u00f3 hacer algo al respecto. No solo don\u00f3 el tumor de su hija a la ciencia, sino que ahora est\u00e1 recaudando fondos para apoyar la innovadora investigaci\u00f3n de la Dra. Michelle Monje, doctora en medicina y doctora en filosof\u00eda, con la esperanza de encontrar una cura. En una visita reciente al laboratorio de la Dra. Monje, Mycah nos cont\u00f3 la inspiradora historia detr\u00e1s del milagro de Maiy.<\/p>\n

\u00bfPuede contarnos un poco sobre la historia de Maiy y c\u00f3mo decidi\u00f3 apoyar a Packard Children's?<\/strong><\/p>\n

Vibrante, bondadosa y elocuente son solo algunas palabras para describir a Maiyanna. Solo llevaba tres a\u00f1os en este mundo cuando el Hospital Infantil de Pittsburgh le descubri\u00f3 un tumor DIPG masivo en el tronco encef\u00e1lico en mayo de 2013. Empezamos a investigar, cambiamos la dieta de Maiyanna y descubrimos que la Dra. Michelle Monje, del Hospital Infantil Lucile Packard de Stanford, era la investigadora l\u00edder mundial en DIPG. Cuando llam\u00e9 a la Dra. Monje en busca de ayuda, su voz, llena de compasi\u00f3n y empat\u00eda, me dijo al otro lado del tel\u00e9fono que, lamentablemente, no hab\u00eda nada prometedor en cuanto a tratamiento que pudiera ofrecer. Como madre, estaba en completa negaci\u00f3n y me compromet\u00ed a "vivir" con el diagn\u00f3stico de Maiyanna. Maiy nunca llor\u00f3 por su enfermedad, ni siquiera cuando perdi\u00f3 la capacidad de caminar y jugar con amigos y familiares. Nos mantuvimos ocupadas disfrutando de alimentos org\u00e1nicos que combaten el c\u00e1ncer, participando en concursos de belleza, viajando a Disneylandia, haciendo fiestas, pint\u00e1ndonos las u\u00f1as y siendo princesas. Cuando finalmente acept\u00e9 la realidad de que Maiyanna morir\u00eda, volv\u00ed a llamar a la Dra. Monje para preguntarle sobre el proceso de donaci\u00f3n de tumores. A\u00fan no hab\u00eda presentado la documentaci\u00f3n cuando Maiyanna falleci\u00f3 la noche del 16 de abril de 2014 a los 4 a\u00f1os. Llam\u00e9 a los m\u00e9dicos locales de Maiyanna para coordinar la donaci\u00f3n de su tumor y, sorprendentemente, me dijeron que no pod\u00edan hacerlo. As\u00ed que llam\u00e9 a la consulta de la Dra. Monje y ella me respondi\u00f3 de inmediato, asegur\u00e1ndose de que le extrajeran el tumor. Hasta el d\u00eda de hoy me siento honrada por su arduo trabajo y su capacidad para hacer posible lo imposible.<\/p>\n

\u00bfPuedes contarme algo sobre tu recaudaci\u00f3n de fondos? El milagro de Maiy<\/a>?<\/strong><\/p>\n

El Milagro de Maiy naci\u00f3 para brindarle a Maiyanna la mejor calidad de vida durante su proceso de DIPG. Lo logramos asegur\u00e1ndonos de que no le faltara nada y que disfrutara compartiendo sus experiencias con cualquiera que quisiera crear estos recuerdos especiales con ella. Expresando su deseo de que el Milagro de Maiyanna contin\u00fae, ahora creamos experiencias para celebrar la vida de Maiyanna y su proceso de DIPG. El 19 y 20 de mayo de 2017, celebramos las fechas del diagn\u00f3stico de Maiyanna con la Barbacoa de Mariposas y Fiesta de Pintura de Maiyanna, que finaliz\u00f3 con una Liberaci\u00f3n de Mariposas Vivas y el Baile de Mariposas de Maiyanna, donde \u00a1#Dance4DIPG! Invitamos a nuestros amigos y familiares a comprar una caja personal para mariposas o a hacer una donaci\u00f3n para participar en las actividades de pintura y plantaci\u00f3n. Vendimos espacio para el Baile de Mariposas de Maiyanna en MaiysMiracle.org, donde todos los ingresos se destinar\u00e1n a la Beca para Estudiantes de Investigaci\u00f3n de DIPG Maiyanna Marie Antoinette Clemons-McCarthy.<\/p>\n

\u00bfQu\u00e9 espera lograr con su recaudaci\u00f3n de fondos\/evento?<\/strong><\/p>\n

Espero crear conciencia sobre el DIPG creando una experiencia inolvidable para todos los presentes. Tambi\u00e9n espero animar a otros a seguir celebrando la vida y a mantener la esperanza en tiempos dif\u00edciles. Principalmente, espero motivar a quienes asistan a apoyar los esfuerzos de Maiy's Miracle para recaudar $6,000 para la beca de 2018, dando vida a la esencia de Maiy y compartiendo informaci\u00f3n actualizada sobre el progreso de la investigaci\u00f3n del DIPG a trav\u00e9s de la Beca Maiyanna.<\/p>\n

Como recaudador de fondos exitoso de Champion for Children, \u00bfqu\u00e9 consejos le dar\u00eda a otras personas interesadas en iniciar una recaudaci\u00f3n de fondos?<\/strong><\/p>\n

Primero que todo, es un honor ser reconocido como un "recaudador de fondos exitoso" ya que es el deseo de mi coraz\u00f3n hacer mucho m\u00e1s por la investigaci\u00f3n de DIPG a trav\u00e9s del Laboratorio Monje. Animar\u00eda a quienes quieran iniciar una recaudaci\u00f3n de fondos a que simplemente lo hagan. Reconozcan que no es f\u00e1cil, ser\u00e1 mucho trabajo, as\u00ed que traten de construir un equipo fuerte, pero entiendan que nadie ser\u00e1 tan apasionado como ustedes. Entiendan "por qu\u00e9" quieren recaudar fondos, comprom\u00e9tanse y ll\u00e9venlo hasta el final. No gasten mucho dinero, ah\u00f3rren todo y no tengan miedo de pedir lo que necesiten. Cada donaci\u00f3n cuenta, ya sea tiempo, talento o tesoro; solo recuerden agradecer a quienes los ayudaron. Sean flexibles y organizados. No se desanimen si no se alcanza una meta, planifiquen otro evento y hagan cosas que est\u00e9n en su coraz\u00f3n y dentro de sus posibilidades para que disfruten del proceso. Gracias a mis esfuerzos por apoyar a la Dra. Monje, he aprendido que, aunque no haya recaudado la mayor cantidad ni pertenezca a la organizaci\u00f3n m\u00e1s grande, lo que he hecho realmente marca la diferencia en la vida de quienes reciben nuestra donaci\u00f3n, lo que a su vez influye en la investigaci\u00f3n de DIPG. Esto significa mucho para m\u00ed, ya que trabajo en honor a mi hija y es lo que me motiva a hacer todo lo posible para ayudar a las familias con DIPG en el futuro.<\/p>\n

\u00bfPor qu\u00e9 es importante para usted recaudar fondos para ayudar a otras familias? \u00bfQu\u00e9 espera para los ni\u00f1os y las familias bajo nuestro cuidado?<\/strong><\/p>\n

Para m\u00ed es importante recaudar fondos para ayudar a otras familias que experimentan DIPG a comprender que, como madre soltera que perdi\u00f3 a su \u00fanico hijo, la vida y mi aprecio por la vida no se han detenido. De hecho, a trav\u00e9s del DIPG encontr\u00e9 mi prop\u00f3sito: buscar la paz a trav\u00e9s de mi fe y ayudando a los dem\u00e1s. Quienes enfrentan dificultades, incluso ajenas al DIPG, se sienten alentados por mis esfuerzos, lo que, en \u00faltima instancia, me anima a m\u00ed. Adem\u00e1s, el hecho de que la investigaci\u00f3n sobre el DIPG se financie principalmente a trav\u00e9s de fundaciones privadas como Maiy's Miracle y donaciones independientes me inspira a recaudar fondos para que la pr\u00f3xima familia que llame a la Dra. Monje en busca de ayuda reciba una voz de entusiasmo y la seguridad de que ella puede guiarlos hacia algo prometedor para su hijo y su familia.<\/p>\n

Espero que los ni\u00f1os y las familias que reciben atenci\u00f3n en el Hospital Infantil Lucile Packard de Stanford reconozcan a sus profesionales de la salud como miembros genuinos y dedicados de la comunidad m\u00e9dica, comprometidos con la erradicaci\u00f3n de un c\u00e1ncer infantil devastador, a la vez que ofrecen las mejores opciones de tratamiento y atenci\u00f3n disponibles en el mundo. No me cabe duda de que el personal actual ya est\u00e1 haciendo de esto una realidad, y ese es el Milagro de Maiy.<\/p>\n

\u00bfTienes una idea para recaudar fondos? Escr\u00edbenos o vis\u00edtanos. CampeonesLPCH.org<\/a> Para m\u00e1s informaci\u00f3n.<\/p>","protected":false},"excerpt":{"rendered":"

Cuando Mycah Clemons perdi\u00f3 a su \u00fanica hija, Maiy, de 4 a\u00f1os, a causa de un glioma pontino intr\u00ednseco difuso, un tumor cerebral raro e inoperable que afecta principalmente a los ni\u00f1os, ella\u2026<\/p>","protected":false},"author":17,"featured_media":14845,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[22],"class_list":["post-3894","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","health_topic-neurology","health_topic-pediatric-cancer"],"acf":[],"yoast_head":"\nMycah lost her 4-year-old daughter to DIPG. 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