SINDROME NO IDENTIFICADO: Mejorar calidad de vida
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Hola, mi nombre es Ginnette Lara, estoy apoyando a mi sobrina Natalia Alvarez Lara ya que su caso fue aceptado en un hospital de Estados Unidos para tratar las afecciones producto de su condición médica, ya que a la fecha aún no ha sido diagnosticada con un síndrome específico, lo cual ha limitado que desde su nacimiento pudiera recibir tratamiento médico. Les comparto una reseña del historial médico descrito por mi prima, madre de Natalia:
"Mi nombre es Judith Lara y ella es mi hija Natalia Álvarez Lara, actualmente tiene 15 años de edad. Desde su nacimiento presentó algunas dificultades que fueron tratadas por los médicos, como: reflujo y convulsiones. Neurológicamente ha sido evaluada con retardo psicomotor global, ha tenido convulsiones eventuales en el transcurso de su crecimiento y desarrollo, las cuales han sido controladas con medicamento que contiene ácido valproico (atemperator), el cual toma de forma permanente. También fue diagnosticada con micro cráneo e hipotonía de origen central. Físicamente con rasgos desformogenético. Discapacidad intelectual; Síndrome convulsivo/epilepsia.
Ha sido sometida a algunas cirugías: una por funduplicatura de nissen 360° y gastrostomía a los 22 meses de edad, y otra por hernia postincisional. Desde el mes de septiembre del año 2021, le diagnosticaron tendencia a escoliosis que se hace más evidente.
Debido a mi situación económica no le han podido realizar los estudios médicos necesarios y aprovechando la oportunidad que el hospital esta dando, estoy acudiendo a la solidaridad de todos los que puedan leer esta historia y cooperar con la causa que me motiva a buscar ayuda en esta plataforma. Es por esta razón, que necesito mucho de tu apoyo económico para cubrir todos los gastos implícitos que se generen en el proceso de su estadía en el hospital, ya que es urgente que Natalia pueda ser tratada por su condición actual (escoliosis), y, además, que los médicos puedan obtener un diagnóstico genético que permita que la examinen para llegar a la raíz que ocasiona todas las demás afecciones que progresivamente han provocado deterioro en su salud."
¡Confiando en Dios que llegaremos a la meta!
Hello, my name is Ginnette Lara, I am supporting my niece Natalia Alvarez Lara since her medical case was accepted in a hospital in the United States to treat the illnesses resulting from her medical condition because she has not yet been diagnosed with a specific syndrome, which has limited that she could receive medical treatment since birth. I would like to share a summary of the medical history described by my cousin, Natalia's mother:
"My name is Judith Lara, and she is my daughter Natalia Álvarez Lara, she is 15 years old. When she was born, she presented some difficulties that were treated by doctors, such as reflux and seizures. Neurologically, she has been diagnosed with global psychomotor retardation and has had some seizures throughout her growth and development, which have been controlled with medication containing valproic acid (atemperator) that she must take permanently. Physically, she was diagnosed with micro skull and hypotonia of central origin, as well as deformogenetic traits. Intellectual disability and convulsive syndrome/epilepsy.
She has undergone some surgeries: one for 360° Nissen fundoplication and gastrostomy at 22 months of age, and another for a post-incisional hernia. In September 2021, she was diagnosed with scoliosis that becomes more severe. This is our main concern at the moment because this condition makes her in pain.
Due to my economic situation, doctors have not been able to carry out the necessary medical studies, so with this opportunity that the hospital has given us, I come to all of those who can read this story and cooperate with the cause that motivates me to seek help on this platform. It is for this reason, that I need a lot of your financial support to cover all the expenses that are generated in the process of her stay in the hospital, since it is urgent that Natalia can be treated for her current condition (scoliosis), and, in addition, that the doctors can evaluate her to obtain a genetic diagnosis of her unknown syndrome and get to root that causes all these other illnesses that have progressively caused deterioration in her health."
Trusting in God that we will reach the goal!
Hello, my name is Ginnette Lara, I am supporting my niece Natalia Alvarez Lara since her medical case was accepted in a hospital in the United States to treat the illnesses resulting from her medical condition because she has not yet been diagnosed with a specific syndrome, which has limited that she could receive medical treatment since birth. I would like to share a summary of the medical history described by my cousin, Natalia's mother:
"My name is Judith Lara, and she is my daughter Natalia Álvarez Lara, she is 15 years old. When she was born, she presented some difficulties that were treated by doctors, such as reflux and seizures. Neurologically, she has been diagnosed with global psychomotor retardation and has had some seizures throughout her growth and development, which have been controlled with medication containing valproic acid (atemperator) that she must take permanently. Physically, she was diagnosed with micro skull and hypotonia of central origin, as well as deformogenetic traits. Intellectual disability and convulsive syndrome/epilepsy.
She has undergone some surgeries: one for 360° Nissen fundoplication and gastrostomy at 22 months of age, and another for a post-incisional hernia. In September 2021, she was diagnosed with scoliosis that becomes more severe. This is our main concern at the moment because this condition makes her in pain.
Due to my economic situation, doctors have not been able to carry out the necessary medical studies, so with this opportunity that the hospital has given us, I come to all of those who can read this story and cooperate with the cause that motivates me to seek help on this platform. It is for this reason, that I need a lot of your financial support to cover all the expenses that are generated in the process of her stay in the hospital, since it is urgent that Natalia can be treated for her current condition (scoliosis), and, in addition, that the doctors can evaluate her to obtain a genetic diagnosis of her unknown syndrome and get to root that causes all these other illnesses that have progressively caused deterioration in her health."
Trusting in God that we will reach the goal!
Organizer
Ginnette Lara
Organizer
Tampa, FL