Fondo Medico Para Miranda Anastasia

Hello Friends, family and compassionate angels!

Mi name is Miranda Anastasia, I am 3 years old. I am from Caracas, Venezuela. I need your help for several medical exams that I need to have done, as well as to buy medicines, buy of medical equipment (Stimulator of the Vagus Nerve)   and food supplements that I cannot find in my country.

My Story:

I was born on April 12th, 2016. Seven days later I stopped breathing in 3 occasions and turned purple. I was rushed to the doctor and was hospitalized for 4 days. They could not find the cause of my suffocation. They said it was reflux. I was sent home and referred to a Child neurologist because of a cyst on the left side of my frontal lobe and to a Paediatric Cardiologist to evaluate if my lack of oxygen was due to any heart condition.

I did very well on the cardiologist´s evaluation. The Child neurologist could not find the cyst the other doctors had seen in the hospital, but he confirmed that I had a very strong reflux problem. He prescribed treatment for it.

When I turned one month I started making weird movements. My parents recorded it and showed the video to the Neurologist, who already suspected and then confirmed that I was having convulsive episodes. Since then we have gone to many other specialists and they have run a series of tests. The last electroencephalogram (EEG Test) showed Hypsarrhythmia (very chaotic and disorganized brain electrical activity) and so I was diagnosed with Infantile Spasms. Thanks to some economic aid from different entities I was able to start treatment with Adrenocorticotropin (ACTH) in the private clinic “Centro Médico Docente la Trinidad” in Caracas. The treatment has decreased a lot the amount of spasms but they have not stopped completely. Dr. Contreras, The Epileptologist treating me, suspects I have a metabolic disease and thanks to Dr. Colmenares from the hospital “Materno Infantil de Caricuao” they were able to send some samples to Madrid (Spain). The results came back normal. They cannot 100% discard the metabolic disease, but more specific tests are required.

I was then referred to a geneticist, Dr. Arcia. He explained to my parents that in my country (Venezuela) it is not possible to make the genetic tests. These need to be done either in the USA, Germany or Spain. Therefore, I ask for your help. I need these tests to figure out where my convulsions are coming from so that I can take the proper treatment.

My convulsive episodes have not stopped and right now I am taking the following Anticonvulsants:

Lamotrigina

Onirema (Nitrazepam)

Sabril (Vigabatrin)

Fenobarbital

These medicines are very difficult to find. My parents are doing a huge effort to make sure I have them.

On April of this year (2017) the doctors inserted a nasogastric tube through my nose to feed me, since I cannot swallow properly and sometimes the food goes to my lungs, causing continuous pulmonary infections. Dr. Sosa (my pediatric gastroenterologist) insists that if I do not get better, they will have to place a gastrostomy tube (G-tube) inside my body, which my parents are trying to avoid, and because of it they are taking me to Swallowing therapy. They feed me with soups to which they add protein powders to prevent me from losing weight. In my country it is very difficult to find food supplements like Pediasure, which would be better.

After my ACTH Therapy, my parents take me to a new therapy. It is called “Cuevas Medek Exercises” which is a Psychomotor Therapy that has helped me a lot. I have better control of my head, I move my hands more and I am trying to roll over. Please I need your help to be able to have the tests done and find the cause of my convulsions so that these can be controlled with the adequate treatment. Also, to buy my medicines and food supplements to ensure my adequate growth.

Thank you so much for your help, may it be multiplied in blessings to you.



!Hola Amigos, Familiares y Ángeles Caritativos!

Mi Nombre es Miranda Anastasia tengo 3 años, soy de Caracas-Venezuela. Necesito de su ayuda para varios exámenes médicos que me debo realizar, compra de equipo medico (Estimulador del Nervio Vago), compra de medicamentos y suplementos alimenticios que en mi país no se pueden realizar o comprar.

Mi Historia:

Nací el 12 de Abril del 2016, a los 7 días de nacida me puse moradita y deje de respirar en tres ocasiones, me llevaron al médico y me dejaron hospitalizada por 4 días.  No encontraron la causa de mi asfixia, según era el reflujo, me dieron de alta y me remitieron a un neuropediatra por un quiste que vieron en mi lóbulo frontal izquierdo y a un cardiopediatra para descartar que mi falta de oxígeno fuera por alguna falla en mi corazón.

El Cardiopediatra me evaluó y salí muy bien. El Neuropediatra me evaluó y no consiguió el quiste, pero si confirmo que mi reflujo era muy fuerte. Me mando tratamiento para eso.
Al cumplir mi primer mes de vida comencé hacer un movimiento raro, mis padres lo grabaron y se lo llevaron al Neuropediatra; confirmando sus sospechas, estaba teniendo episodios convulsivos. Desde ahí hemos recorrido médicos especialista y me han realizado una serie de exámenes. Los últimos electroencefalogramas si arrojaron alteraciones: hipsiarritmia, me diagnostican Espasmos Infantiles. Gracias a varias ayudas económicas de distintos entes me colocaron el tratamiento con la ACTH en el Centro Medico Docente la Trinidad, el tratamiento bajo muchísimo la cantidad de espasmos pero no han cedido completamente, la Epileptologa doctora Contreras (Centro Medico Docente La Trinidad) que me trata considera que tengo una enfermedad Metabólica y gracias a la doctora Colmenares (Materno Infantil de Caricuao) enviaron las muestras a Madrid y salieron normales, no se descarta aun la enfermedad metabólica pero debemos realizar más exámenes específicos. 


Me remitieron a un genetista, el doctor Arcia le explica a mis padres que en mi país no pueden realizar los exámenes genéticos, que debe ser en Estados Unidos, Alemania o España. Por ello les pido su colaboración, es necesario hacerme estos exámenes para conseguir de donde vienen las convulsiones y así poder colocarme el tratamiento adecuado.

Aun no cesan los episodios convulsivos y en estos momentos tomo 4 anticonvulsivos:

Lamotrigina
Onirema (nitrazepam)
Sabril (Vigabatrin)
Fenobarbital

Los cuales son muy difíciles de conseguir, mis padres hacen un esfuerzo enorme en conseguirlos.
En el mes de Abril de este año (2017) me colocaron una sonda nasogástrica para alimentarme, ya que no trago bien y todo se va a mis pulmones ocasionando continuas infecciones pulmonares, la doctora Sosa mi gastropediatra insiste que si no mejoro deben colocarme un gastrotomo, algo que mis padres no desean, por ello me llevan a mis terapias de deglución. Me alimentan con sopas y le agregan proteínas en polvo para evitar que baje de peso ya que es muy difícil conseguir pediasure o suplementos alimenticios completos.


Luego del ACTH mis padres me llevan a unas nuevas terapias, se llama Método Cuevas Medek Exercises las cuales me han ayudado muchísimo, controlo mejor mi cabeza, muevo más mis manos y quiero dar vueltas. Por favor necesito de su colaboración para poder realizarme los exámenes y encontrar el origen de mis convulsiones y así poder controlar mis convulsiones con el tratamiento adecuado, comprar mis medicamentos y suplementos alimenticios para asegurar un adecuado crecimiento.



Muchísimas gracias por tu aporte, que se te multipliquen en miles de bendiciones.




Hello Friends, family and compassionate angels!

Mi name is Miranda Anastasia, I am 3 years old. I am from Caracas, Venezuela. I need your help for several medical exams that I need to have done, as well as to buy medicines, buy of medical equipment (Stimulator of the Vagus Nerve) and food supplements that I cannot find in my country.

My Story:

I was born on April 12th, 2016. Seven days later I stopped breathing in 3 occasions and turned purple. I was rushed to the doctor and was hospitalized for 4 days. They could not find the cause of my suffocation. They said it was reflux. I was sent home and referred to a Child neurologist because of a cyst on the left side of my frontal lobe and to a Paediatric Cardiologist to evaluate if my lack of oxygen was due to any heart condition.

I did very well on the cardiologist´s evaluation. The Child neurologist could not find the cyst the other doctors had seen in the hospital, but he confirmed that I had a very strong reflux problem. He prescribed treatment for it.

When I turned one month I started making weird movements. My parents recorded it and showed the video to the Neurologist, who already suspected and then confirmed that I was having convulsive episodes. Since then we have gone to many other specialists and they have run a series of tests. The last electroencephalogram (EEG Test) showed Hypsarrhythmia (very chaotic and disorganized brain electrical activity) and so I was diagnosed with Infantile Spasms. Thanks to some economic aid from different entities I was able to start treatment with Adrenocorticotropin (ACTH) in the private clinic “Centro Médico Docente la Trinidad” in Caracas. The treatment has decreased a lot the amount of spasms but they have not stopped completely. Dr. Contreras, The Epileptologist treating me, suspects I have a metabolic disease and thanks to Dr. Colmenares from the hospital “Materno Infantil de Caricuao” they were able to send some samples to Madrid (Spain). The results came back normal. They cannot 100% discard the metabolic disease, but more specific tests are required.

I was then referred to a geneticist, Dr. Arcia. He explained to my parents that in my country (Venezuela) it is not possible to make the genetic tests. These need to be done either in the USA, Germany or Spain. Therefore, I ask for your help. I need these tests to figure out where my convulsions are coming from so that I can take the proper treatment.

My convulsive episodes have not stopped and right now I am taking the following Anticonvulsants:

Lamotrigina

Onirema (Nitrazepam)

Sabril (Vigabatrin)

Fenobarbital

These medicines are very difficult to find. My parents are doing a huge effort to make sure I have them.

On April of this year (2017) the doctors inserted a nasogastric tube through my nose to feed me, since I cannot swallow properly and sometimes the food goes to my lungs, causing continuous pulmonary infections. Dr. Sosa (my pediatric gastroenterologist) insists that if I do not get better, they will have to place a gastrostomy tube (G-tube) inside my body, which my parents are trying to avoid, and because of it they are taking me to Swallowing therapy. They feed me with soups to which they add protein powders to prevent me from losing weight. In my country it is very difficult to find food supplements like Pediasure, which would be better.

After my ACTH Therapy, my parents take me to a new therapy. It is called “Cuevas Medek Exercises” which is a Psychomotor Therapy that has helped me a lot. I have better control of my head, I move my hands more and I am trying to roll over. Please I need your help to be able to have the tests done and find the cause of my convulsions so that these can be controlled with the adequate treatment. Also, to buy my medicines and food supplements to ensure my adequate growth.

Thank you so much for your help, may it be multiplied in blessings to you.

Donations

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  • María Blanco  
    • $10 
    • 15 mos
  • Paulocesar Sanchez 
    • $10 
    • 15 mos
  • Jacqueline Velasquez 
    • $10 
    • 17 mos
  • Francis Perez  
    • $10 
    • 17 mos
  • Carla B 
    • $250 
    • 17 mos
See all

Organizer and beneficiary

Iris Carolina 
Organizer
Atlantic Beach, FL
Linda Maria Rodriguez 
Beneficiary
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