Mi nombre es Pérez (47) y soy de la Sierra Norte de Puebla, México. Hace dos años me diagnosticaron el síndrome de Vulpian-Bernhardt, una variante clínica de la Esclerosis Lateral Amiotrófica (ELA), también conocida como la enfermedad de Lou Gehrig. Es una enfermedad de las neuronas del cerebro, el tronco encefálico y la médula espinal que controlan el movimiento muscular voluntario. He enfrentado este diagnóstico y esta enfermedad con todas mis fuerzas, incluso sometiéndome a una cirugía por una hernia umbilical que se desarrolló al mismo tiempo debido a los espasmos musculares. Los pacientes con síndrome de Vulpian-Bernhardt pueden esperar una esperanza de vida más larga (en promedio 61 meses) que los pacientes con ELA clásica (21-35 meses), pero, en última instancia, sigue siendo una enfermedad progresiva, mortal y sin cura.

Podría enumerar más síntomas y estadísticas, pero todo en lo que puedo pensar es en mi médico diciéndome que, para una persona con ELA, es como si estuviera atrapada dentro de su propio cuerpo. Es plenamente consciente de todo —sus capacidades mentales permanecen intactas—, pero ha perdido la capacidad de decirle a su cuerpo qué hacer. Necesito esperanza y fortaleza para enfrentar los efectos debilitantes de esta enfermedad. Este año, mi ELA se ha vuelto más evidente y más grave. A pesar de haber pasado un año completo bajo tratamientos médicos, su efectividad ha sido muy lenta y necesito una nueva alternativa. Lo máximo que puedo esperar para prolongar mis posibilidades de llevar una vida autónoma y aliviar el sufrimiento físico y el dolor es una terapia intensiva que debo pagar de mi propio bolsillo, ya que no está cubierta por el sistema público de salud aquí en México. Estos fondos se destinarían a un nuevo programa de rehabilitación enfocado en ejercicios de fortalecimiento y estiramiento para las extremidades inferiores, así como terapia ocupacional para las extremidades superiores.

¿Cómo puedes ayudarme?

El tratamiento consiste en tres sesiones de terapia por semana durante un año. El costo total es de MXN $150,000 (aproximadamente $8,500 USD). Estoy buscando apoyo para cubrir esta cantidad con la esperanza de acceder a este nuevo tratamiento que me ayude a seguir combatiendo esta enfermedad. Como agradecimiento, puedo ofrecer clases particulares de inglés en línea con toda la dedicación y la experiencia que tengo como estudiante de un segundo idioma. Por favor, ayúdame a tener la oportunidad de enfrentar esta enfermedad con toda la fortaleza y autonomía posibles.

Hola, estoy solicitando apoyo en está recaudación de fondos en GoFundMe. Si puedes, por favor considera apoyar haciendo una donación o compartiendo el enlace. Cada muestra de apoyo marca una enorme diferencia.

https://gofund.me/89bc42b9

My name is Israel Perez (47), and I am from the town of Sierra Norte de Puebla, Mexico. Two years ago, I was diagnosed with with Vulpian-Bernhardt's syndrome, a clinical variant of Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig's Disease. It is a disease of the neurons in the brain, brainstem, and spinal cord that control voluntary muscle movement. I have faced this diagnosis and disease with all my strength, even having surgery for an umbilical hernia that developed at the same time due to muscle spasms. Vulpian-Bernhardt's syndrome patients can expect a longer lifespan (on average 61 months) than classic ALS patients (21-35 months), it is ultimately a progressive, fatal disease with no cure.

I can list further symptoms and statistics, but all I can think about is my doctor telling me that for a person with ALS, it's as if they are trapped inside their own body. They are fully aware of everything--their mental faculties remain sharp--but they have lost the ability to tell their body what to do. I need hope and strength to face the debilitating effects of this disease. This year, my ALS has become more noticeable and more severe. Despite spending a full year on medical treatments, the effectiveness is very slow, and I need a new alternative. The most I can hope to help me prolong my chances of an autonomous life and alleviate the physical duress and pain is extensive therapy that must be paid out of pocket because it is not covered by the public health system here in Mexico. These funds would go toward a new rehabilitation program focused on strengthening and stretching exercises for the lower extremities, as well as occupational therapy for the upper extremities.

How can you help me?

The treatment consists of three weekly therapies for one year. The total cost is MXN $150,000 (or about $8500 USD). I’m seeking support to cover this amount in the hopes of pursuing this new treatment to help me combat this disease further. As a thank you, I can offer you private English classes online with all the dedication and experience I have as a second language learner. Please help me have the chance to face this disease with all the strength and autonmía

My name is Israel Pérez, I am 47, and I come from the Sierra Norte de Puebla. I live in San Antonio Zaragoza, in the municipality of San Salvador, Hidalgo, Mexico.

Two years ago, doctors diagnosed me with amyotrophic lateral sclerosis, ALS, also known as Vulpian Bernhardt syndrome. This disease affects neurons in the brain, brainstem, and spinal cord that control voluntary muscle movement. I have faced it with strength. I even underwent surgery for an umbilical hernia that developed at the same time due to muscle spasms. At present, no cure exists, only treatments such as physical, occupational, and speech therapy, including swallowing support.

Over time, my condition has prevented me from working due to prolonged disability, which has made it difficult to cover my medical expenses. In 2025, the disease has progressed and become more severe. Despite a full year of alternative treatments, progress remains slow, so I now seek a new option.

This treatment aims to improve my quality of life through a rehabilitation program focused on strengthening and stretching exercises for the lower limbs, along with assisted passive exercises and occupational therapy for the upper limbs. However, the public health system does not cover it, and the cost exceeds my means.

How can you help?

The treatment requires three therapy sessions per week for one year, with a total cost of MXN 150,000. I seek support to cover this amount so I can access this opportunity and regain hope.

As a gesture of gratitude, I offer private online English classes, backed by my dedication and experience as a second language learner.

Your support, whether financial or by sharing this message, can make a meaningful difference in my life. Please help me access this treatment and face this disease with strength and autonomy.