Please Help Jock in the Fight of His Life

51860586_1603662202151933_r.jpeg51860586_1603662222749383_r.jpeg51860586_1603662253796536_r.jpeg51860586_1603662308942102_r.jpeg51860586_1603661513372893_r.jpegJock was born on March 2, 2011. The news of his arrival to the world made all of those who knew his parents so happy! However, six months after his birth, his parents realized that something was wrong… Jock couldn't hold his head up, couldn't turn around, or sit up. It was then when his parents began their difficult journey...

For the next two months, he was examined by multiple doctors, but none of them found the answer to his problem. Then, when he turned 8 months old, a doctor suggested doing a test that found the issue: Jock’s motor and cognitive development was that of a 1-month-old baby. When his parents took these results to a neurologist, he announced to them that Jock had HYPOTONIC CEREBRAL PALSY.

Hypotonic Cerebral Palsy is a disease that affects speech, movement, posture, and coordination; in addition to decreasing muscle tone, causing flaccidity and difficulties in learning to walk. Despite the gloomy diagnosis, his parents didn’t lose hope. They took Jock to multiple therapies that helped him continue his life -almost- normally.

In 2013, they decided to move to Florida so they could give Jock a better quality of life. For years, his diagnosis remained the same. However, they continued to bring Jock to specialists, so that they could advise them on the best way to improve his situation. Jock did physical, occupational and speech therapies that helped him to be able to move with the help of a walker, improving his quality of life and letting him have a normal childhood.

However, in 2018 and after a genetic study, it was discovered that Jock not only had Hypotonic Cerebral Palsy but also had “CACNA1A” with PR1359W De Novo variant, a neurodegenerative condition that over time atrophies the cerebellum of the patient causing the progressive appearance of diverse functional alterations including motor coordination.

At the time of diagnosis, Jock's cerebellum had not yet been affected, but on September 5th of this year, doctors discovered that his cerebellum was beginning to atrophy and recommended his parents “to prepare for what's to come."

Despite his rare disease, Jock is a happy boy who’s constantly with a smile on his face. Although he walks with the help of the walker, Jock loves to play soccer, is a fan of video games, loves to sing, and even dances. He’s a child who struggles every day to be happy and better... but his body prevents him from doing so, a little more every day.

There are days when Jock doesn't stop moving and playing, and others when he can't even stand up from his chair... and as his disease continues to progress, there will come to a point in which he will lose all those great results that he achieved through the therapies that he’s been doing since he was 7 months old.

This news was devastating for his family. They were so excited about the possibility of Jock being independent and living a life as normal as possible. The new diagnosis forced them to change the focus of their efforts, but the goal remains the same: that Jock continues to be a happy and smiling child.

Jock and his family are pretty much on their own here in Florida. They don’t have any close family living nearby and their family abroad is very poor. Jock's parents work tirelessly to barely meet his needs, but at the same time they are missing out on what may be their last moments with him because this rare, genetic, and degenerative disease is already in the stage of brain atrophy. Jock's brain could stop working anytime soon, and unable to send the body the order to breathe.

Although Jock's parents know there will be days of pain and helplessness ahead, they do not want this to be an impediment to giving their child the happy and fulfilled life he deserves.

That’s why we must help them!

Whether you can donate a little or a lot, anything will help these parents so that they can enjoy some additional happy moments with their little boy, who needs them so much. Please help me to help them!

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Jock nació el 2 de Marzo de 2011. ¡La noticia de su llegada al mundo nos alegró tanto a todos los que conocíamos a sus padres! Sin embargo, a los seis meses de su nacimiento sus papás se dieron cuenta que había algo que andaba mal… Jock no podía sostener su cabeza, tampoco podía voltearse ni sentarse. Fue entonces que sus papás comenzaron su travesía…

Durante dos meses visitaron a diferentes médicos pero ninguno hallaba la respuesta de su problema. Recién a sus 8 meses un médico sugirió hacerle una prueba que descubrió que el desarrollo motor y cognitivo de Jock era el de un bebé de 1 mes. Cuando sus papás le llevaron estos resultados a un neurólogo, él les comunicó a sus papás que Jock padecía de PARÁLISIS CEREBRAL HIPOTÓNICA.

La Parálisis Cerebral Hipotónica es una enfermedad que afecta el habla, el movimiento, la postura y la coordinación, además de disminuir el tono muscular, provocar flacidez y generar dificultades para aprender a caminar. A pesar de ello, sus papás no bajaron los brazos, comenzaron terapias para Jock y continuaron su vida casi de manera normal.

En 2013, decidieron mudarse a Florida para poder darle a Jock una mejor calidad de vida. Durante años, su diagnóstico continuó igual. De todas formas, continuaron llevando a Jock a especialistas para poder descubrir la mejor manera de mejorar su situación. Jock hizo terapias físicas, ocupacionales y del habla que lo ayudaron a poder moverse a través de un andador, mejorar su calidad de vida y tener una infancia dentro de todo normal.

Sin embargo, en 2018 y tras un estudio genético, se descubrió que Jock no sólo tenía Parálisis Cerebral Hipotónica sino que además tenía “CACNA1A” con variante P.R.1359W De Novo, una condición neurodegenerativa que con el tiempo atrofia el cerebelo de quien lo padece provocando la aparición progresiva de diversas alteraciones funcionales del cerebelo, como por ejemplo, la coordinación motora.

Al momento del diagnóstico, el cerebelo de Jock no había sido afectado. Pero el 5 de Septiembre de este año, los médicos descubrieron que éste estaba comenzando a atrofiarse y le recomendaron a sus papás “prepararse para lo que puede venir”.

A pesar de la rara enfermedad que padece, Jock es un niño feliz que vive con una sonrisa en el rostro. Si bien usa caminador, Jock ama jugar al soccer, es fanático de los videojuegos, ama cantar y hasta baila. Es un niño que todos los días lucha por ser y estar mejor… pero su cuerpo se lo impide todos los días un poco más.

Hay días en los que Jock no para de moverse y jugar, y otros en los que directamente no puede ni pararse de su silla… y si su enfermedad sigue avanzando, llegará un punto en el que perderá todos esos grandes resultados que obtuvo con las terapias que hace desde los 7 meses…

Esta noticia fue devastadora para su familia. Ellos tenían muchísima ilusión de lograr que Jock pudiera independizarse y vivir una vida lo más normal posible… El nuevo diagnóstico los obligó a cambiar el enfoque de sus esfuerzos, pero el objetivo sigue siendo el mismo: que Jock siga siendo un niño feliz y sonriente.

Jock y su familia están muy solos en Florida. Sus papás trabajan sin descanso para poder apenas cubrir sus necesidades, pero al mismo tiempo se están perdiendo de los que quizás sean sus últimos momentos junto a él. Esta enfermedad poco frecuente, genética y degenerativa ya está en etapa de atrofia cerebral, por lo que el cerebro de Jock a veces deja de funcionar, lo que impide que éste envíe la orden de respirar…

Aunque saben que habrá días de dolor e impotencia, ellos no quieren que esto sea un impedimento para darle a su hijo la felicidad que se merece…

¡Por eso tenemos que ayudarlos!

Ya sea que podamos donarle poquito o mucho, todo podrá ayudar a estos papás para que puedan disfrutar de momentos felices junto a su hijito que tanto los necesita. ¡Ayúdenme a ayudarlos!

Donations

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  • Suyin Gonzalez  
    • $20 
    • 15 d
  • Omar Grijalva 
    • $80 
    • 20 d
  • Emanuel Fernandez 
    • $500 
    • 23 d
  • Felix Marin 
    • $20 
    • 24 d
  • Joao Lamenza 
    • $50 
    • 26 d
See all

Organizer

Andreina Protti 
Organizer
Miami, FL
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