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Juanchi’s Story

Site created on July 4, 2018

Hace casi 12 años Juanchi llego a nuestras vidas 13 semanas antes de lo esperado y desde ese momento el mundo nunca fue igual para todos aquellos que lo han conocido. Juanchi es brillante, activo y cariñoso. Ocurrente como el solo y con una chispa que pareciera que hubiera vivido toda su vida en Venezuela. Es imposible no enamorarse de su picardía, de su amor por sus amigos, de su energía y de su fuerza de voluntad.

Aquellos que no conocen su historia, se sorprenden al saber que Juanchi ha estado lidiando con insuficiencia renal toda su vida. Se sorprenden porque al verlo jugar baseball o futbol, o interactuando con sus amigos, no parece un niño al que sus riñones solo le funcionaban al 10% de su capacidad. Los doctores muchas veces nos han dicho que otros niños con esa misma capacidad renal están echados en una cama, sin energía y que ellos no entienden como Juanchi es como es.

Para nosotros, la respuesta es que Juanchi es un milagro andante. Dios le ha regalado 12 años maravillosos con esos riñones y una fuerza de voluntad que lo ha ayudado a sobreponerse a una condición que ha otros los tiene en una cama. Sin embardo el deterioro de sus riñones ya es evidente y ha llegado el momento de hacerle un trasplante.

La mujer mas increíble del mundo, con la que me case ya hace mas de 18 años va a ser el donante. Como lo hico hace 12 años, Vivi va a entregarle un pedacito de su vida a Juanchi para que el cambiando el mundo y llenándonos a todos lo que lo conocemos de su amor por la vida, de su fuerza de voluntad y de su increíble risa.

(Shorter version in English)

Juan Ignacio is a beautiful 11-year-old boy (soon to be 12 as he likes to remind us). He is bright, very active and he is definably the “troublemaker”. Juanchi is the kind of kid that is impossible not to fall in love with, because of his naughtiness, because of his love for his friends and because of his energy and his will. By looking at him, you would never guess it, but Juanchi has kidney failure, he has ~15-20% of normal kidney function. However, this has never stopped him from doing anything. Doctor always wonder how Juanchi lives the live he lives.

For us the answer is simple: Juanchi is a walking miracle. God has given us 12 wonderful years with those kidneys. He has also given Juanchi a will power that has allowed him to overcome a condition that has other kids in bed. However his kidneys are starting to give up and the time has come to do a transplant.

The most wonderful woman in the world, the one I married almost 18 years ago is going to be the donor. Just like she did 12 years ago, Vivi is going to give Juanchi a little piece of her, so he can continue changing the world y and sharing with all of us around him his love for live, his strong will and his just incredible laugh.

mily and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Bernardo Munoz — Aug 12, 2018

El viernes pasado nos dieron de alta. Juanchi terminó de recibir las 3 dosis de los del nuevo tratamiento. El resto del tratamiento es pastillas que puede tomar en la casa. Fue un día largo, al final salimos como a las 5pm. Ayer y hoy han sido días de recuperarnos un poco y de compartir los 5 en la casa. Gracias a todos por estar tan pendientes de nosotros.

Shorter version in English.

Last Friday Juan was released from the hospital. He received the last Dosis of the new medication. It was a long day, we left the hospital arround 5. Yesterday and today have been recovery days and time to share the 5 of us. Thanks to every body for thinking of us.

Read More of the journal titled "En la casa / at home!!"

Juanchi esperando que los dejen salir del hospital. Juanchi waiting for us to get released from the hospital.

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