Save Soraya

€53,084 of €500,000 goal

Raised by 1,623 people in 3 months
English Version below (Scroll down)

Ustedes no conocen a nuestra querida Soraya pero para los que tenemos esa suerte sabemos que es una de esas personas que siempre quieres tener en tu vida, ella es una mujer inteligente, solidaria, creativa, alegre y luchadora, pero a veces las peores cosas pasan a las mejores personas.

Soraya tiene 33 años, nació en Benalmádena, Málaga, fué diagnosticada de leucemia linfoblástica aguda el 17 de julio de 2017, cuando se encontraba trabajando en Edimburgo.

Cuando le diagnosticaron tenía un 98% de células con cáncer en su sangre, su madre, familiares y amigos pusieron en marcha este proyecto que consiste en salvar su vida, su madre fué a Edimburgo para realizar el traslado al Hospital Regional Universitario de Málaga y pudiera comenzar con el tratamiento.

Al ser una Leucemia muy resistente y de mal pronóstico, el equipo médico acordó un tratamiento más agresivo que ofrecía mayores posibilidades de curación y tras meses de lucha consiguió la remisión necesaria para realizarle un trasplante de médula, en el que su hermana Katrina fue la donante, el trasplante se realizó el 12 de diciembre de 2017.

La medicación para la leucemia es muy dura, el trasplante es un proceso muy delicado y difícil de aguantar, en muchos momentos estuvo al borde de la muerte pero consiguió superarlo cumpliendo con todas las prescripciones médicas, estudiando para entender su enfermedad y con mucha fuerza de voluntad. Consiguió reponerse tras meses de hospitalización, tratamiento psicológico y la energía de una persona que a pesar de estar muy enferma se agarra a la vida. Soportar aquella situación no fué fácil, la recuperación fue lenta, la pruebas muy dolorosas pero llegó la recompensa a tanto esfuerzo y el cáncer se mantuvo a raya. Una gran alegría para ella y para todos, se estaba recuperando y ya sólo tendría que ir a revisiones control.

Parecía que Soraya estaba ganado en la batalla contra el cáncer, así que retomó su vida, volvió a sus proyectos, pues es artista, recobró la curiosidad que siempre le ha caracterizado, planeó viajes, se armó de ganas de vivir y nos enseñó a todos que la vida es lo más importante que tenemos.

En noviembre de 2018 esta alegría se difumina cuando tiene que acudir de nuevo al hospital por un dolor que resulta ser un tumor maligno y la operan quitándole el ovario, parte del intestino y el apéndice. La operación quirúrgica fue complicada y el post-operatorio doloroso, pero superó todo con éxito y sigue con fuerza para recuperarse de las cicatrices.

En la revisión anual que le realizaron el 26 de diciembre de 2018 desgraciadamente le informaron de que la leucemia había vuelto de forma explosiva. El doctor decidió ingresarla inmediatamente para empezar con quimioterapia pero llegado el momento el médico y la madre de Soraya hablaron y estuvieron de acuerdo en que Soraya no aguantaría la quimioterapia, ya que es una medicación muy agresiva y su estado de salud, aún recuperándose de una operación, es muy frágil.

Para ganarle algo de tiempo al cáncer le han puesto un tratamiento a base de esteroides y antivirales, con probable mantenimiento de quimio suave ( la retirada del tumor no permite tratamiento más agresivo o segundo trasplante) mientras el hospital ha solicitado a la Junta de Andalucía permiso para un tipo de inmunoterapia menos agresiva que la quimioterapia y que se ajusta mejor a sus necesidades. Según los criterios médicos y administrativos el tratamiento es económicamente muy costoso y tienen que decidir si se lo aplican o no, tienen que decidir si merece la pena el coste de salvar una vida según sus estadísticas y a día de hoy aún no hay respuesta…

El tratamiento con inmunoterapia sería un puente para hacer reducir el cáncer el máximo de tiempo posible y proporcionarle tiempo vital para probar con ensayos clínicos fuera de Europa que le permitan vencer definitivamente a la leucemia, sabemos que en otros lugares del mundo se están realizando ensayos clínicos con CARTcells y que en Europa hay centros donde se está investigando con resultados muy positivos.

Soraya no tiene tiempo para esperar una resolución administrativa, además la administración puede decidir no invertir en ese tratamiento y dejar que Soraya muera, es por esto que necesitamos tu ayuda, necesita de la empatía de esta sociedad, ya que estamos hablando de una vida y de dinero.

Hay fondos reservados para casos que excedan criterios médicos y presupuestos que ponen en valor la vida humana y estos son esos casos. Si ella tuviese el dinero suficiente para pagarlo ya se lo estarían aplicando. ¿Acaso ésto es justo?

Y aunque no la conozcas, aunque sólo sea un caso más que ves en Internet, estos casos son en los que hay que estar unidos para salvar vidas y abrir caminos por los que nunca se sabe quién tendrá que pasar.

Su familia, amigos y doctores estamos con ella. Apóyanos para salvar la vida de Soraya.

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15/01/2019


Ayer fue un día intenso. Recibí la mejor de las noticias, el tratamiento con esteroides de 3 semanas ha conseguido reducir la carga tumoral a un nivel aceptable para empezar con otra estrategia, se llama infusión de linfocitos del donante junto con una quimio oral para buscar un efecto llamado Injerto contra Leucemia, se busca que el sistema inmune ataque ligeramente mi cuerpo con la esperanza de mantener la Remisión el máximo tiempo posible…sigue siendo una terapia puente hacia la consolidación como tratamiento definitivo.


Tiene riesgos, este mismo ataque también se produce sobre mi cuerpo, puede atacar cualquier órgano... comienza el juego que nadie mejor que los hematólogos o ingenieros biológicos saben orquestrar, y es encontrar el balance más óptimo entre perjuicio/beneficio en mi organismo.

La medicación con inmunoterapia se queda aparcada por ahora, aún no se ha confirmado si estará disponible de necesitarse.


Toca ser cautos, esta enfermedad me ha enseñado a intentar no sobreexcitarme tanto con las buenas como con las malas noticias... como siempre, relativizando, buscando el equilibrio interior para adaptarse a lo que pueda venir.


Toca respirar hondo, digerir, confiar, vivir…ser realista y esperanzada.


Y todo con una sonrisa enorme en el alma, que nace por vuestro apoyo.


Peace.

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15/02/19

Actualización de Katrina Bradley (madre de Soraya)

I decided not to go to Paris, many reasons, hope to get to the next meeting in London for Car-T cells. So sad that this treatment is exhorbantly expensive, it is a billion pound industry on a huge marketing drive in Europe and selling to public and private health services in UK and the rest of Europe. Clinical trials have to be finalised and results made public before treatment stage. Unfortunately my daughter had a malignant ovarian tumor removed 20th November 2018 which disqualifies her for these trials. We are doing everything in our power to build up Soraya's strength with radical nutrition and supplements, her doctors are closely monitoring her monthly infusión of donor leukocytes as they can cause severe adverse reactions to her vital organs. We live on a knife's edge as it only takes one blood analysis to give us devastating news. Her daily chemotherapy pill has been stopped and we take one day at a time. As a family we are all still in shock by Antonio's sudden death two weeks ago but I believe he is looking after us all, like he always has done #savesoraya

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14/04/19

Como dice una buena amiga... It's OK not to be OK.

Pero como también me aconseja mi compañero de vida... "Sonríe aunque no tengas ganas" "Mejora el sistema inmune... Es una cuestión química".

Hoy me permití disfrutar de un estupendo día entre las mías, la naturaleza, las risas, haciendo un esfuerzo por redirigir los pensamientos, las preocupaciones y proyecciones... Me permití descansar.

Hace tiempo que no hago una actualización médica, esperaba que el tratamiento de Infusión de Linfocitos pudiese mantener a raya la enfermedad durante más tiempo... Pero los síntomas empezaron a hacerse más presentes y el 4 de Abril la médula mostró un crecimiento de unos 30% de blastos, mi equipo decidió cambiar de tratamiento ya que no está haciendo efecto y por fin recibí las buenas noticias de que la Inmunoterapia BESPONSA se había aprobado por la comisión de la Junta, simplemente estoy a la espera de que lo gestione la farmacia del hospital y se decidan los ciclos, la duración y el tipo de administración, se trata de un tratamiento puente, no lo ven como una opción curativa.

El objetivo ahora es controlar la enfermedad el máximo de tiempo posible e ir ganándole minutos al inexorable reloj de la vida, hasta decidir el tipo de tratamiento más adecuado, sin importar dónde se encuentre.

Todo queda en manos de la Serendipia.

Peace

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English version

You may not know our dear Soraya but for those of us who have such luck, we know that she is one of those people that you always want to have in your life. She is an intelligent, supportive, creative, happy and tough fighter but sometimes the worst things happen to the best people. 

Soraya is 33 years old, was born in Benalmádena, Málaga, and was diagnosed with acute lymphoblastic leukemia on July 17, 2017, when she was working in Edinburgh. 

When she was diagnosed with 98% of cells with cancer in her blood, her mother Katrina, family and friends launched this project to save her life. Her mother went to Edinburgh to make the transfer to the Regional University Hospital of Malaga so her treatment could be started.

Being a very resistant leukemia with a poor prognosis, the medical team agreed to a more aggressive treatment that offered greater possibilities of cure and after months of struggle achieved the necessary remission to perform a bone marrow transplant, in which her sister Katrina was the donor. The transplant was performed on December 12, 2017.

The medication for leukemia is very harsh, the transplant is a very delicate process and difficult to endure, on several occasions she was on the verge of death but managed to overcome it by complying with all the medical prescriptions, studying to understand her illness and with great willpower. She managed to recover after months of hospitalisation, psychological treatment and the energy of a person who despite being very sick clings to life. Supporting that situation was not easy, the recovery was slow, the tests very painful but the reward came with so much effort and the cancer stayed at bay. A great joy for her and for all, she was recovering and would only have to go to regular checkups and control reviews.

It seemed that Soraya had won her battle against cancer, so she resumed her life, she returned to her projects, because she is an artist. She recovered the curiosity that has always characterised her, she planned trips, she was armed with the will to live and she taught us all that life is the most precious and important thing we can ever have. 

In November of 2018 this joy faded when she had to go back to the hospital for a pain that turned out to be a malignant tumour. Her medical team operate by removing an ovary, part of the intestine and the appendix. The surgical operation was complicated and the post-operative period painful, but she successfully overcame everything and continued with strength to recover from the operation.

In the annual review performed on December 26, 2018, she was devastatingly informed that the leukemia had returned explosively. The doctor decided immediately to start with chemotherapy but when the time came, the doctor and Soraya's mother spoke and they agreed that Soraya was too weak and would not stand the chemotherapy, since it was a very aggressive medication and her health, still recovering from the operation, was still very fragile.

In order to gain some time from the cancer, at the moment they are giving a treatment based on steroids and antivirals, with a mild chemo (the removal of the tumor does not allow more aggressive treatment or a second transplant) while the hospital has requested the Junta de Andalucía permission for a type of immunotherapy that is less aggressive than chemotherapy and that best suits her needs. According to the medical and administrative criteria, the treatment is very very expensive and they have to decide whether to give it or not. They need to decide if it is worth the cost of saving a life according to their statistics and today there is still no answer ...

The treatment with immunotherapy would be a bridge to reduce the cancer for as long as possible to provide vital time to try clinical trials outside Europe that allow Soraya to overcome definitively the leukemia. We know that elsewhere in the world they are conducting clinical trials with CARTcells and that in Europe there are centres where research is being carried out with very positive results. 

Soraya does not have the time to wait for an administrative resolution, besides the administration could decide not to invest in that treatment and let Soraya die. This is why we need your help, need the empathy of this society, since we are talking about a life against the money that is needed.

There are funds reserved for cases that exceed medical criteria and budgets that value human life and this is such a case. If Soraya had enough money herself to pay for it, she would already be in receipt of the treatment.   

And even if you do not know Soraya, even if it's just one more case that you see on the Internet, these cases are where you need to be united to save lives.  

Soraya´s family, friends and doctors are with her. 

 

                                                                                         Please support us to save Soraya's life.

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Soraya is a beautiful young woman. She is Katrina´s (my friend) daughter. Her and her husband have asked that I write this for them. I will do my best.

Soraya was working in Edinburgh, when diagnosed with the dreadful disease called Leukemia. Her mum flew to Scotland as soon as she found out, as there was a 24 hour window to get her home to Spain as her Leukemia was at 98%. Soraya managed to get on a flight with her mum and a bed was booked in Malaga's Carlos Haya, and she went straight to the hospital from the airport. where she started treatment immediately. Her prognosis was poor from the beginning, however due to the skill of her doctors over months and then a bone marrow transplant from her sister, she seemed to be doing well. There were however, some extremely bad days when life literally hung in the balance, and  she seemed to becoming out the other side, and at the beginning of 2018 she was thankfully finally allowed home. 

However in November of 2018, only 6 weeks ago, Soraya had an unrelated malignant tumour removed from her ovaries. This has completely set her back as she was still recovering from her Leukemia treatment. During 2018 Soraya suffered, and still does, with PTSD and sees a psychologist to help her come to terms with what is happening. As you can imagine, it must be terrifying to go through so much so young. Soraya also takes anti- cancer nutrition, supplements, etc. She wants to live. 

On Soraya's bucket list was a trip to Iceland, with her sister, which was previously booked and they were due to leave on the 10th January. 
The devastating news came on the 26th December, during the Xmas break, that her Leukemia had returned. 
The doctor wanted to start Chemotherapy again immediately and she was booked in two days later. Her mum, the morning she was due to go in, hadn't slept at all and was at the hospital early as she instinctively knew she would not survive Chemo again. When a mother sleeps on a chair by her daughters bed for months at a time, willing her to survive, she knows what her daughter can tolerate.  The doctor said at this point that he hadn't slept either and agreed with her,  so it was decided, to give her a treatment plan that she might survive, which was steroids and an anti viral medication, with the net step being new immunotherapy drugs. This would hopefully get her into remission and then accepted for CART - T Cell trials or treatment. 

This treatment is not available in Europe, and Soraya is not eligible for trails as she is still recovering from the ovarian cancer. The current situation is that Soraya is waiting on a government decision to receive the immunotherapy drugs, if they say yes, this is only a bridge to get her to America or Israel for Cart-T Treatment. If they say no, there may be an option to pay, however the news is not coming through either way so far. 
Unfortunately, this treatment is very expensive, plus flights, hospital stays, accommodation, supplements, and even food, have to
come into consideration. 

My dear friend Katrina, and a friend to everyone she meets, is Soraya's mum. Katrina has phoned and emailed hospitals all over  the globe whilst trying to look after her sick daughter, maintain a home and keep some normality for the three grandchildren also living at home. 

I remember Soraya telling me that when she first came out of isolation after three months and was allowed outside, that it was the breeze on her face that she loved the most. 

We take the smallest things for granted every second  of every day.
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Treatment for inmunotherapy has been approved thank God. All we are waiting for now is the pharmacy to inform us when Soraya can start. It is only the second time the treatment is being administered at our hospital and we have been told by our doctor that this is a bridging, temporary procedure to gain time for Soraya. If we are successful then we have to look for a plan to keep her in remission. Thank you everyone for giving us your support. One step closer to saving Soraya. #savesoraya #donamedula #inmunotherapy xx
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Picked my lovely neice from airport, so happy to have her support, #savesoraya, relapsed Post transplant ALL, looking for best treatment options, we don't have time to wait for answers, we have to research, find trials and give Soraya the best chance of survival, please support our fund, thank you, Soraya's mum x
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Thank you to all who have supported the fund and enabled us to get a private biopsy. Unfortunately the results confirmed that Soraya's clinical condition has got worse, she wasn't due another biopsy on the NHS for another couple of months, so thank God we were able to monitor her illness more closely. When we informed her own team of doctors in the public health service, they quickly ordered another biopsy which confirmed that of the Private Sector. They have decided to request Immunotherapy treatment from Seville. (this was also requested in December but we did not get an answer). As you know I had a meeting last week with The Head of Cabinet Carlos Leon Fortea, Regional Minister of Health. He assured me verbally that if the doctors requested a treatment for Soraya that it would not be denied. I called him this morning, I hope and pray that we receive the answer soon. We cannot afford to wait like we did in December without an answer. Easter is coming up, I need an answer soon, we all know that everything grinds to a halt for Easter. I refuse to allow my daughter to be denied a treatment that she so badly needs. If need be I will camp outside the government office and go on a hunger strike, sorry for such a long post, #savesoraya, x
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Thank you to all who have supported the fund and enabled us to get a private biopsy. Unfortunately the results confirmed that Soraya's clinical condition has got worse, she wasn't due another biopsy on the NHS for another couple of months, so thank God we were able to monitor her illness more closely. When we informed her own team of doctors in the public health service, they quickly ordered another biopsy which confirmed that of the Private Sector. They have decided to request Immunotherapy treatment from Seville. (this was also requested in December but we did not get an answer). As you know I had a meeting last week with The Head of Cabinet Carlos Leon Fortea, Regional Minister of Health. He assured me verbally that if the doctors requested a treatment for Soraya that it would not be denied. I called him this morning, I hope and pray that we receive the answer soon. We cannot afford to wait like we did in December without an answer. Easter is coming up, I need an answer soon, we all know that everything grinds to a halt for Easter. I refuse to allow my daughter to be denied a treatment that she so badly needs. If need be I will camp outside the government office and go on a hunger strike, sorry for such a long post,
If it wasn’t for all your support we would not be able to have detected this stage so thank you everyone #savesoraya,
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