Juan Camilo Martínez Chaparro 12 años

Paciencia y mucha felicidad, eran los síntomas que abundaban en Roxana Chaparro, pues se aproximaba el momento de ver el rostro de aquel bebé que con amor había cuidado en su vientre. Pero algo inesperado ocurrió, al sexto mes de embarazo los médicos dicen que el bebé viene con una hidronefrosis derecha (exceso de líquidos en los riñones) y que por ese motivo debía ser operado en el momento de nacer. Tras varios exámenes, los doctores se dan cuenta que el tiempo gestacional no coincide con el tamaño del bebé, sin embargo, a los ocho meses se ven obligados a sacar al bebé del útero.


Nueve en punto marcaba el reloj aquel día que nació el pequeño y con algo de alivio su mamá recibió la noticia que no había necesidad de operarlo de hidronefrosis pero sí debía pasar toda la noche en observación, pues era muy pequeño. Es así como a la 1 de la tarde del siguiente día Roxana puede observar a su bebé Juan Camilo; estuvo 15 días en la incubadora con fototerapia y varias transfusiones de sangre porque se le bajó la bilirrubina, sin embargo, su madre nunca se apartó de él.


Juan para ser un bebé de ocho meses era muy pequeño y presentaba bajo peso, aun así tras 15 días de observación le dan salida del hospital luego de estar en el plan canguro, donde orientaron a su madre sobre los cuidados que debía tener con el pequeño. Con un mes de edad, Roxana descubre una celulitis de dedo derecho, razón por la que ingresa hospitalizado al niño 15 días más; en este tiempo, le da una hipertensión pulmonar, por ello al salir del hospital se le recomienda usar oxígeno, con el cual el pequeño dura cuatro meses.


Juan tenía un año y medio cuando empieza a caminar, le da un paro cardiorespiratorio por unas acidosis tubulares, lo que hace que vuelva al hospital por 15 días más. De allí salió bien, y posteriormente estuvo en estudios de genética donde se diagnosticó Síndrome de Russell Silver (se caracteriza debido a que es una discapacidad de crecimiento de origen prenatal, facies característica y asimetría de extremidades). En ese momento, el amor fortalece a Roxana, pues era una noticia que no esperaba, lo único que ella quería era que su bebé estuviera bien, por eso, sigue acompañando a Juan en todo.


En medio de la situación, Roxana estuvo acompañada de su hermano, quien murió al poco tiempo de nacer Juan, también de su esposo, quien ha estado acompañándolos en cada proceso, decepciones y victorias. La hermana de Juan también ha estado pendiente, aunque ella es mayor comparte con él y lo cuida. Para Juan compartir con su familia es importante, el pasar tiempo con su hermano con quien puede jugar y explorar nuevos mundos en su imaginación.


Juan ingresó al jardín con 4 años de edad, con temor su madre estuvo pendiente de todo, en este lugar jugaba mucho con sus compañeros; aunque era un poco inquieto su profesora lo quería. Al poco tiempo Roxana sacó al niño de este jardín, y lo llevó a uno privado con el fin que él aprendiera más, la profesora era una amiga de la familia y ya tenía conocimiento de la situación.


En este nuevo lugar Juan se desenvolvió de una manera especial, pues no había dejado el pañal y allí con apoyo de sus maestras lo logró, además aprendió a leer y a escribir. Juan culminó su etapa de jardín y su madre muy agradecida con el proceso de su hijo se despidió de la etapa de jardín y embarcaron rumbo a un nuevo proceso de vida, la escuela.


En este lugar han conocido maestras que apoyan el proceso de Juan, y su madre siempre procura inculcar que el trato debe ser igual para todos, y que por ello no debe existir discriminación o menosprecio por las personas en condición de discapacidad. “Juan es un niño muy funcional, por eso hay que tratarlo de manera normal” afirma Roxana Chaparro. Aunque hay algunas clases que se le dificultan, se han buscado nuevas maneras de adaptarlas a él.


Allí en la escuela, en una reunión con la educadora especial, se menciona FUNDEI, una entidad que apoya el proceso de personas con discapacidades y fortalece múltiples habilidades. Es así como Roxana asiste a FUNDEI “me gustó y ahí estoy”.


FUNDEI es la primera fundación a la que asiste Juan con su madre, aunque existen varias Roxana no creía que el acompañamiento fuera el adecuado en estos lugares, mientras que en esta pudo ver la inclusión e integración para todos. Además se apuesta al crecimiento personal y familiar de los integrantes de la fundación. En FUNDEI, Juan ha fortalecido sus habilidades en las artes, sus clases favoritas son dibujo y danzas; con la danza ha podido desarrollar expresión corporal y nuevos movimientos.


Allí hay un acompañamiento de profesionales en múltiples áreas y esto ha ayudado a Juan a poder expresarse y crecer a nivel personal, pues algunas actividades que se le dificultaba hacer, ya le son más fáciles. Cada sábado con emoción entra a clase de danzas donde se desenvuelve como todo un bailarín profesional. A clase de dibujo siempre llega con una sonrisa y emociones que a la hora de dibujar le ayudan a plasmar en papel todas esa ideas que imagina.

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