Relato en español

Cuando nació Matías el 28 de abril del 2022 junto a su hermanito gemelo Julián, sabíamos que Matías tuvo una condición diferente.

Fueron prematuros extremos, nacieron de 27 semanas de gestación y ambos padecíeron de enterocolitis necrotizante.

No podían comer por varios días y en primera instancia el médico desahució a Matías cuando cayó en paro cardiaco; pero las cosas se revirtieron y al día siguiente fallecio mi hijo Julián, el médico que lo trató dijo lo peor que una madre podía escuchar “no hay cura para su hijo Matías es muy pequeño para resistir la cirugía que necesita” (colostomía).

Fueron varios días que pasaron en el hospital; nosotros como padres horas charlando buscando un milagro que resucite a nuestro hijo, los días siguientes fueron similares.

El 7 de mayo Matías entró al quirófano del hospital del Iess en Cuenca - Ecuador sin ninguna esperanza de vida, y nosotros como padres consternados por la situación nos encontramos en un túnel sin salida, hasta que después de unas horas salió el médico; admirado y sorprendido nos dijo “Matías resistió” desde ahí mi hijo ha sido nuestro ángel de luz, días después fuimos ganadores de una lotería de visas para EEUU y así pudimos llegar a este país el 7 de marzo de 2023 desde entonces Matías ha sido hospitalizado por varias ocasiones intentando realizar el cierre de su colostomía y por diferentes motivos fueron suspendidas tres cirugías.

El 18 de Marzo de 2024 el Dr Isam Nasr Cirujano Pediatra en Johns Hopkins cambió la vida de mi hijo cuando se dio con éxito el cierre de su colostomía y para nosotros como padres fue un día especial que marcó nuestras vidas…

Sin embargo no sabíamos que su recuperación sería complicada pues su intestino comenzó a funcionar por primera vez y las cosas se comenzaron a dificultar Matias empezó a tener diarrea crónica y su cuerpo se contamino de bacterias que resultaron ser resistentes a la medicina inicial, entonces su herida no curó por varias semanas empulsando un líquido amarillento.

Como padres nos afectó la situación porque tenemos otra hija llamada María Cristina que tiene 3 años entonces tomábamos turnos para el cuidado de nuestros hijos y esto no nos permitió trabajar por todo este tiempo, como padres tenemos la esperanza de recolectar el dinero para los gastos que se nos acumularon durante estas semanas de ausencia en nuestros trabajos y comprar los implementos para el cuidado adecuado de mi hijo en casa recalcando que aún tiene diarrea y para esto necesitamos pañales especiales, medicina, vitaminas y alimentación especial. Las palabras no pueden expresar cuánto significa su donación para nosotros pero su apoyo generoso será luz en nuestras vidas, dándonos la fuerza y el coraje para seguir adelante incluso cuando las cosas se ponen difíciles.

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history in English

On April 28, 2022, Matias and his twin brother Julian were born in Cuenca, Ecudaor. As most parents, we were exciting for the addition of a new child to our family. Unfortunately, Matias and his twin brother came into this world as an emergency delivery. They were born prematurely at 27 weeks of gestation and both suffered nectrotizing enterocolitis (NEC). During their first few days into this world, they were attached to breathing ventitlation because their lungs were not fully developed. They were unable to tolerate food due to the infection. Soon enough, Matias fell into cardiac arrest as his twin brother remained stable. As a parent, this was devastating to imagine and we prayed for a miracle. He was resuscitated and we felt blessed to have both of our babies. But after a day, we heard the most devastating news that our other baby Julian had passed away. We felt an unimaginable pain as we mourned the loss of our child and prayed for the recovery of our other child. The doctor told me the worst thing a mother could hear, “ Matias is too little to survive the operation he will need. “ That surgery being a colostomy in hopes of saving a portion of his intestine. Matias spent several days in the hospital but we ultimately decided to pursue this surgery and pray for the best. On May 7, Matias entered for surgery with a gurantee by the doctor that he will not survive. After a few hours the doctor returned, admired and surprised, he told us “Matias survived”. From there, my son was our miracle baby and we knew our guardian angel Julian were taking care of us. Days later my cousin called me and told me we were winners of the United States Visa lottery. I could not believe what I was hearing, my life long dream had finally come true after so many years. We came to this beautiful country on March 7th, 2023 in hopes of giving our children a wonderful life, that may have been challenging in our third world country, Ecuador. Matias continued to progress, but at a much slower rate. We knew he was not receiving appropriate level of nutrtion and were advised to look for a surgeon to close his colostomy and rejoin his intestines. Since our arrival to this country, Matias has had several surgery arrangements and cancelation. Until March 18, 2024 where we met Dr Isam Nasir, pediatric trauma surgeon from Johns Hopkins. He changed the life of my son and successful closed his colostomy. As parents, we had to invest our entire time and energy into the recovery of Matias. Unfortunately as a family we suffered and Matias older sister, Maria Cristina, who is 3 years old spent countless nights in the hospital supporting her brother. My husband and I took shifts staying in the hospital with Matias, due to this we had to take time off from our jobs which has caused a financial set back. This situation has affected us greatly, as parents we hope to collect money for the expenses that we accumulated during these weeks of absence in our jobs and continuous purchases of medical requirements that Matias will need to include sensitive diapers, medicine, vitamins and food. Words cannot express how much each donation means to us as a family. Your generous support will be light in our lives, giving us the strength and courage to move on even when things get tough.