Help Vanessa get life-saving treatment

$167,541 of $190,000 goal
Given by 1561 generous donors in 21 days

Help Vanessa get life-saving treatment for atypical hemolytic uremic syndrome (aHUS)

Auckland

On January 24, Vanessa, a senior lecturer at The University of Auckland and NZ citizen, was admitted to Auckland City Hospital and later diagnosed with atypical hemolytic uremic syndrome (aHUS), an ultra-rare, life-threatening disease for which the only treatment proven to be effective is eculizumab (marketed under the brand name Soliris). Eculizumab has been approved in New Zealand but it's not publicly funded.

Eculizumab treatment costs about 100 000 NZD for the first month and then about 60 000 NZD each subsequent month.

Vanessa has savings to cover just the first month of the treatment. Her intention is to get treated in New Zealand for as long as it's necessary for her to be healthy enough to travel to Spain to continue her treatment.

This fundraiser aims to cover 3 months of treatment, at 60 000 NZD/month.

Marina Sanchez's involvement (page creator)

Long-time, dear friend

Use of funds

All the money received through this campaign will go exclusively to support Vanessa's hospital and treatment expenses for as long as it's needed for her to be strong enough to fly to Spain and continue her treatment there.

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Latest update

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Today. Ah TODAY!  10 September 2021

Posted by: Vanessa Enriquez Raido

Six and a half months ago today, I received, just like Ashley Thomas did five years ago, the worst news of our lives: "YOU HAVE ATYPICAL HEMOLYTIC UREMIC SYNDROME (aHUS)." aHUS is an ultra-rare autoimmune disorder that affects the blood stream and kidneys, causing them to shut down. It can also affect other vital organs, such as the brain, heart, lungs, liver and gastrointestinal system. My brain was unable to do its usual thing (think), my heart significantly increased its size (hypertrophy), and my lungs were full of fluid.

aHUS presented itself in my life with acute onset vomiting, abdominal pain, severe migraine, lethargy and the inability to urinate, which led to fluid retention and caused a 5-kilo weight gain, as well as facial and peripheral swelling. Both kidneys and my gastrointestinal system had completely shut down. In addition to being severely anemic, my white blood cell count was extremely high, while my platelets and red blood cell count were dangerously low. My blood pressure and heart rate were at stroke level. I had severe shortness of breath and pulmonary edema, resulting in excruciating difficulty to breath; my skin was a greyish color and I had blue bruises all over my body. Every inch of it hurt like never before! I was very sick and close to death.

My doctors at Auckland Hospital ran every test possible until they had it narrowed down to two different conditions: Thrombotic thrombocytopenic purpura (TTP) and HUS (the atypical or typical type could not be confirmed the day I got admitted to hospital on Monday, 25 January 2021 9AM).

On the evening of January 26, 2021, the doctors were finally able to rule out TTP and confirm my diagnosis: atypical HUS. I had to undergo very aggressive treatment immediately to survive. I was transferred to the critical care unit and received plasmapheresis (cleansing of the plasma), multiple blood transfusions and hemodialysis every day for many days. I also received Eculizumab infusions (the only drug that keeps the disease at bay, and also the most expensive one in the world) 11 days after I was admitted to the emergency department. I spent all my life-savings to pay for four weekly infusions at approximately 22,000 New Zealand dollars each, but I needed more infusions to be alive. I had to flee New Zealand (my adopted country) to be able to get to Spain (my home country), where the drug is subsidized. Meanwhile, an old-time and dearest friend of mine quickly realized the need to start a fund-raising campaign so I could continue paying for more infusions until I was strong enough to be able to fly to Spain. I received a whole lot of love, support and prayers from family, friends, my partner (who cheerfully asked me to marry him when we were both so close to losing hope), work colleagues, donors (anonymous and not) and my medical team at Auckland Hospital as well as the the Arquitecto Marcide Hospital where I am currently being treated in Ferrol (Galicia, Spain).

Just as Ashley Thomas herself recalls 5 years ago, for someone who has never had any health problems, this experience was ONE WILD RIDE! One that we both hope we NEVER have to experience again! The psychological trauma of having to leave my entire life and all my New Zealand whanau behind is far from being overcome. I am being treated with anti-depressants to cope with this one hell of a ride!

But today. OH TODAY! Today I am alive and close to my other family in Spain!

Despite how scary and nerve-racking this time was for me and my family and all my beloved ones, it was also an intense learning experience. It made Ashley and myself (and so many other aHUS patients) realize how quickly a life can be taken and how beautiful life truly is. It allowed us to prove to ourselves just how strong-minded and determined we are; especially when it comes to living! This medical diagnosis taught me that family, friends and truly kindled people REALLY are everything to me. Without them, I wouldn't have made it. I learned that I'm a fighter... A WARRIOR! But I also learned that I am certainly not the only one. Most of all, it taught me that there are so many WARRIORS in this world! Without them, without YOU, I know I wouldn't be here today and for that I am forever grateful.

Thanks, again, to everyone who helped me get where I am at today!

With all my love, Vanessa ❤️❤️❤️

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HOY. Un maravilloso día hoy!

Hace seis meses y medio HOY, me dieron, tal y como le sucedió a Ashley Thomas hace cinco años, la peor noticia de nuestras vidas: "TIENES UN SINDROME HEMOLITICO UREMICO ATIPICO". SHUA es una enfermedad autoinmune ultra rara que provoca la oclusión de la circulación sanguínea, lo que afecta a órganos vitales como el riñón, corazón, cerebro, pulmón, hígado y sistema gastrointestinal. Mi cerebro estuvo inhabilitado durante días, mis riñones sufrieron falla renal crónica, mis pulmones se encharcaron de líquido y mi sistema gastrointestinal se paralizó por completo.

SHUA se presentó repentinamente en mi puerta con una fuerte migraña, vómitos compulsivos, fatiga aguda y la imposibilidad de orinar, provocando retención de líquido y un aumento de 5 kilos, además de hinchazón facial significativa. Ambos riñones colapsaron, se desató una anemia aguda y galopante, mi recuento de linfocitos se disparó por la las nubes y el nivel de plaquetas y glóbulos rojos, totalmente por los suelos. Mi presión arterial y frecuencia cardíaca, a punto de infarto. Apenas podía respirar, mi piel tenía un aspecto grisáceo y mi cuerpo estaba lleno de moratones de color azul. Sentía que moría de frío en pleno verano austral en Auckland. Sencillamente, caí muy enferma y estuve al borde de la muerte.

Los médicos en el hospital de Auckland realizaron todo tipo de pruebas hasta que consiguieron reducir la gama de diagnósticos a dos posibles enfermedades: púrpura trombótica trombocitopénica (PTT) and SHU (la variedad típica o atípica estaba todavía sin confirmar el día que ingresé por urgencias un lunes 25 de enero de 2021 a primera hora de la mañana).

Aproximadamente a las 8 de la tarde del lunes día 26 de enero de 2021, por fin pudieron confirmarme el diagnóstico: SHUA. Fue necesario administrarme un tratamiento muy agresivo de forma inmediata para poder continuar con vida. Me trasladaron a la UCI, donde me abrieron una vía en la aorta para colocar un catéter y poder recibir así terapia plasmática (infusión de plasma fresco congelado y recambio plasmático), transfusiones de sangre y hemodiálisis durante días y días. También recibí varias infusiones de Eculizumab (un medicamento que inhibe la acción descontrolada del Sistema de Complemento, la línea primitiva de ataque contra posible infecciones) 11 días después de mi hospitalización. Me gasté todos los ahorros de mi vida en pagar cuatro infusiones de este medicamento (el único que funciona y el más costoso del mundo) a razón de unos 22.000 dólares neozelandeses por infusión semanal y poder seguir así con vida, pero éstas no fueron suficientes. Una gran amiga de toda la vida se percató de inmediato, con la perspicacia y agilidad mental que la caracterizan, de la necesidad urgente de poner en marcha una campaña de recaudación de fondos para poder financiar el resto de infusiones que necesité hasta recuperarme lo suficiente como para poder volar a España. En mi pueblo natal, mi familia y amigos más cercanos removieron cielo y tierra para recibir la aprobación del tratamiento mediante Eculizumab que necesito de por vida. Recibí un raudal de apoyo y amor incondicional por parte de familiares, amigos, mi pareja (quien me pidió matrimonio a la verita de la cama del hospital en la que yacía cuando estábamos a punto de perder toda esperanza), compañeros de trabajo, estudiantes, donantes (anónimos y no) y el equipo médico de Auckland, pero especialmente el del hospital Arquitecto Marcide de Ferrol, mi hospital de referencia y “segundo hogar” de una amiga de la infancia y gran médico, tan querida en el pueblo que me vio crecer.

Para no haber padecido nunca ninguna enfermedad grave, fue una experiencia verdaderamente brutal! Una que espero no volver a vivir nunca. El trauma psicológico tras el abandono de una vida anterior y un país que adoraba sigue latente y la depresión continua acechando a la vuelta de la esquina. Y, sin embargo, hoy y todos los días desde ese 25 de enero de 2021 mortal, siento la mayor alegría de mi vida por estar viva y cerca de mi gente más querida.

A pesar del miedo que pasé y que pasaron los míos, ha sido todo un proceso de aprendizaje tanto a título personal como a nivel espiritual. He aprendido lo rápido que se puede esfumar una vida y lo bonito que es vivir. Este trago tan amargo me ha demostrado la persona increíblemente fuerte que soy y lo testaruda que puedo llegar a ser. Me ha hecho recordar que la familia, los amigos y la gente de buen corazón lo son TODO para mí y que, sin ellos, no hubiera sido capaz de superar nunca este gran obstáculo. Aprendí que soy una luchadora, ¡una verdadera GUERRERA! Pero sobre todo aprendí que hay muchos más guerreros en este mundo. Sin ellos, sin VOSOTROS, no estaría aquí HOY.

Así que gracias nuevamente por haberme ayudado a llegar a dónde estoy HOY!

Os estoy eternamente agradecida!

Con todo mi cariño y admiración, Vanessa ❤️❤️❤️

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Latest donations

Myriam Gonzalez Navarro.
Myriam Gonzalez Navarro. on 24 Feb 2021
Esperamos verte pronto, ánimo.
$30
Angela and nicholas kölling
Angela and nicholas kölling on 23 Feb 2021
love from Angela and nicholas kolling
$100
Daniela
Daniela on 23 Feb 2021
Hola Vanessa lo mejor para vos, tu puedes hacerlo.
$30
Sarah
Sarah on 23 Feb 2021
$300
Maria
Maria on 23 Feb 2021
$30

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This page was created on 3 Feb 2021 and closed on 24 Feb 2021.