Photo taken by my girlfriend @dianegr in my sister Claudia's XV. The other boy in the photo is my brother Juan Carlos.
Hola amigos de Hive, soy Cristhian Molina Ramírez y quiero presentarme a ustedes contádoles un poco de mi historia. Nací el 21 de agosto del 2001 en La Habana Cuba. Momentos después de que nací, luego de que me bañaron y me iban a trasladar para devolverme con mi mamá la enfermera que me trasladaba me descuidó y de alguna manera que nunca se aclaró me extravié en el hospital. Me estuvieron buscando un buen rato y mi papá me encontró dentro de una cesta cubierto por telas.
Hello friends of Hive, I am Cristhian Molina Ramírez and I want to introduce myself to you by telling you a little about my story. I was born on August 21, 2001 in Havana Cuba. Moments after I was born, after they bathed me and they were going to transfer me back to my mother, the nurse who was transferring me neglected me and in some way that was never clarified I got lost in the hospital. They were looking for me for a long time and my dad found me inside a basket covered by cloth.
Photography of the wedding of my parents Juan Carlos Molina and Daysi Ramírez.
Seguido a mi nacimiento empecé a dar síntomas de que ahí en adelante yo no iba a ser un niño común y corriente ni iba poder tener una vida normal como los demás. Nací asmático crónico, lo cual me provocó cianosis aguda y fue de extrañar para mi mamá que en su ignorancia, al verme tan oscurito, pensó que yo había nacido así por algún ancestro paterno. Los meses siguientes estuvieron llenos de chequeos y exámenes clínicos, más de los habituales para un recién nacido, y miestra más pasaban las semana más se iba notando los síntomas de aquello que aún los médicos no sabían con certeza qué era. Los primeros exámenes resultaron con dos enfermedades individuales: espasmos sollozos y epilepsia; pero no fue hasta que cumplí el año y medio que después de muchos exámenes médicos tuvieron un diagnóstico: Síndrome de Bannayan-Riley-Rubalcaba una enfermedad rara que hasta ese momento sólo lo tenían 6 personas en el mundo y yo con menos de 2 año de edad era la persona número 7 con diagnóstico oficial. Este síndrome con el que me diagnosticaron by y entre ellas algunas crónicas. En mi caso ya para cuando tenía alredor de 4 años los doctores me habían detectado alredor de un conjunto de 26 enfermedades. No todos los que padesen este síndrome llegan a tener las mismas afecciones; pero a mí me había tocado 26, entre ellas estaban: epilepsia, espasmos sollozos, falta de control muscular, mala absorción intestinal, sobre crecimiento (o sea, que era más alto que lo que debía para mi edad), incontinencia urinaria y anal y leve retraso mental. En una ocasión en que me hicieron una transfusión de sangre debido a las convulsiones que me deban me infestaron con Epatitis C.
Following my birth I began to show symptoms that from then on I was not going to be an ordinary child nor was I going to be able to have a normal life like the others. I was born a chronic asthmatic, which caused me acute cyanosis and it was surprising to my mother that in her ignorance, seeing me so dark, she thought that I had been born like this by some paternal ancestor. The following months were full of check-ups and clinical examinations, more than usual for a newborn, and the more the weeks went by, the more the symptoms of what even the doctors did not know for sure what it was. The first examinations turned up two individual diseases: sobbing spells and epilepsy; but it was not until I was a year and a half old that after many medical examinations they were diagnosed: Bannayan-Riley-Rubalcaba Syndrome, a rare disease that until then only 6 people in the world had and I was less than 2 years old. age was the 7th person with an official diagnosis. This syndrome with which I was diagnosed consisted of several diseases and among them some chronic ones. In my case, by the time I was around 4 years old, the doctors had detected around a set of 26 diseases. Not all those who suffer from this syndrome come to have the same conditions; but I had touched 26, among them were: epilepsy, sob spasms, lack of muscle control, intestinal malabsorption, overgrowth (that is, I was taller than I should be for my age), urinary and anal incontinence, and mild mental retardation. On one occasion when they gave me a blood transfusion due to seizures I was infected with Epatitis C.
Photograph I took of the cover of my medical file.
Para cuando tenía 6 años todavía no podía caminar y casi no hablaba. Como no podía ir a la escuela me asignaron una maestra ambulatoria, la cual iba a la casa a darme clases 2 veces a la semana por 1 hora. Al principio no me adaptaba bien a la profesora y tuvieron que cambiarla por otra, la cual vivía cerca de la casa y era muy buena en su profesión. Con ella pude avanzar muy rápido, y fue ella quien me enseñó a caminar. Mientras crecía mi vida consistía en ir del hospital a la casa constantemente; no podía jugar con otros niños, me sacaban a la calle solo lo necesario, en la casa jugaba solo, veía mucha televisión o jugaba con mi mascota Luna (una perrita salchicha).
By the time he was 6 years old, he still couldn't walk and barely spoke. Since I couldn't go to school, they assigned me an outpatient teacher, who came to my house to give me classes 2 times a week for 1 hour. At first I didn't get along well with the teacher and they had to change her for another one, who lived near the house and was very good at her profession. With her I was able to move very quickly, and she was the one who taught me to walk. Growing up my life consisted of going home from the hospital constantly; I couldn't play with other children, they took me outside only what was necessary, at home I played alone, watched a lot of television or played with my pet Luna (a dachshund).
By the time he was 6 years old, he still couldn't walk and barely spoke. Since I couldn't go to school, they assigned me an outpatient teacher, who came to my house to give me classes 2 times a week for 1 hour. At first I didn't get along well with the teacher and they had to change her for another one, who lived near the house and was very good at her profession. With her I was able to move very quickly, and she was the one who taught me to walk. Growing up my life consisted of going home from the hospital constantly; I couldn't play with other children, they took me outside only what was necessary, at home I played alone, watched a lot of television or played with my pet Luna (a dachshund).
Photo from when I was little with my mom.
A eso de los 10 años mi salud empezó a mejorar significativamente gracias a los milagros que hace Dios. Las idas a los hospitales no eran tan seguidas, aunque continuaba tomando ciertos medicamentos. Los doctores que me habían tratado desde pequeño se asombraban de las mejoras que veían en mí. Yo mismo en mi perspectiva de niño sentía cambios en mi mente al interactuar y estaba feliz de experimentar muchas cosas por primera ves. Ojalá pudiese contarles más detalles de esta etapa pero no tengo ningún recuerdo (ni bueno ni malo) de antes de los 7 años, lo que sé es porque me lo contaron mis padres. Mi mamá también veía como un milagro mi nueva realidad ya que los médicos nunca le dieron esa prognosis positiva.
At about the age of 10 my health began to improve significantly thanks to the miracles that God performs. The visits to the hospitals were not as frequent, although he continued to take certain medications. The doctors who had treated me since I was little were amazed at the improvements they saw in me. I myself in my child perspective felt changes in my mind when interacting and was happy to experience many things for the first time. I wish I could tell you more details about this stage but I don't have any memories (neither good nor bad) from before I was 7 years old, what I know is because my parents told me. My mom also saw my new reality as a miracle since the doctors never gave her that positivo prognosis.
Snapshot in the Christ of Havana.
En el 2013 me gradué de 6to grado de la Escuela Especial "José Briña García". Aún continuaba recibiendo clases en la casa pero ya con mejor calidad. A mis 12 años ya podía relacionarme mejor con otras personas no tan cercanas, al igual que comencé a poder estar en lugares con muchas gente reunidas pues anteriormente no podía porque me daban ligeros ataques de pánico.
In 2013 I graduated from the 6th grade of the "José Briña García" Special School. He still continued receiving classes at home but now with better quality. When I was 12 years old, I was able to relate better with other people who were not so close, just as I began to be able to be in places with many people together, since previously I couldn't because I had slight panic attacks.
En el años 2014 empecé a visitar a una Iglesia Bautista cercana a mi casa por una invitación que me hicieron a una actividad de niños, y poco a poco fui asistiendo regularmente a las actividades en esa Iglesia. Para ese entonces no entendía muy bien las cosas espirituales pero emocionalmente me sentía tan bien. En una ocasión me regalaron una Biblia que fue uno de los primeros libros que leí en mi vida. En ese lugar fui creciendo física, emocional y espiritualmente. Tiempo después me bautizaron y empecé a servir como sonidista dd esa Iglesia. Ahí tuve la oportunida de aprender sobre muchas de las cosas que hoy me apasionan: tocar la batería, pintar, hacer arreglos de electricidad; pasé cursos de informática, edición de videos y fotografías. Al mismo tiempo que aprendía sobre la Biblia, la espiritualidad, que era la moralmente correcto y lo más importante: creer, conocer y amar a Dios.
In 2014 I began to visit a Baptist Church close to my house due to an invitation they gave me to a children's activity, and little by little I began to regularly attend the activities in that Church. At that time I did not understand spiritual things very well but emotionally I felt so good. On one occasion they gave me a Bible that was one of the first books I read in my life. In that place I grew physically, emotionally and spiritually. Some time later I was baptized and I began to serve as a sound engineer for that Church. There I had the opportunity to learn about many of the things that I am passionate about today: playing the drums, painting, doing electricity repairs; I passed computer courses, video editing and photography. At the same time that I was learning about the Bible, spirituality, what was morally correct and most important: believing, knowing and loving God.
Photo taken in the Church I became.
En Abril del año 2016 aquella persona que me había cuidado por 14 años falleció, fueron varios meses duros los que tuve que pasar no solo por el saber que mi mamá estaba en una cama de hospital sin poder reaccionar, sino también porque tenía que verla en ese estado todos los días ya que era yo quien tenía que llevar las cosas al hospital. Los médicos nunca pudieron dar un verdadero diagnóstico del fallecimiento. Eran varias las opiniones debido a las enfermedades que ella padecía pero nada medicamente definitivo.
In April 2016, the person who had cared for me for 14 years passed away. I had to go through several hard months, not only because I knew that my mother was in a hospital bed unable to react, but also because I had to see her in that state every day since I was the one who had to take things to the hospital. The doctors were never able to give a true diagnosis of the death. There were several opinions due to the diseases she suffered from but nothing medically definitive.
En el 2019 servía como sonidista en la Iglesia y también y ya estaba estudiando en la "Facultad Obrero Campecina" fue en ese año cuando conocí a una personita (@dianegr) que llegó para alegrar mi vida. Actualmente tenemos tres años de relación y sentimos el deseo de dar el siguiente paso: casarnos; pero debido a problemas económicos hemos retrasado esa meta. Soñamos también con tener nuestras casa propia.
In 2019 I served as a sound engineer in the Church and also and I was already studying at the "Facultad Obrero Campecina" it was in that year that I met a little person (@dianegr) who came to brighten my life. Currently we have three years of relationship and we feel the desire to take the next step: get married; but due to economic problems we have delayed that goal. We also dream of having our own home.
Photo that I took with my girlfriend @dianegr in a cafeteria in Vedado.
Entre mis metas para el futuro están: terminar la Facultad y obtener el doce grado; además, casarme con mi novia y tener mínimo 4 hijos: 2 biológicos (aunque no sé si mis enfermedaded me lo permitan) y 2 adoptivos.
Among my goals for the future are: finish college and get the twelfth grade; In addition, marrying my girlfriend and having at least 4 children: 2 biological (although I don't know if my illnesses allow it) and 2 adoptive.
Gracias por leer.
Thank you for reading.
