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Every day without a surgery gets Alicia closer to the end. Her life is on the edge. We ask You for help!

Alicja Marciuk
Fundraiser finished
Fundraiser goal:

Fund for a neurosurgical surgery at Tekton Clinic in Barcelona, Spain

Fundraiser organizer: Fundacja Siepomaga
Alicja Marciuk, 52 years old
warszawa, mazowieckie
Zespół Ehlersa Danlosa (EDS) – dysfunkcja układu autonomicznego, samoistny wyciek płynu mózgowo- rdzeniowego
Starts on: 13 April 2018
Ends on: 05 September 2018

Fundraiser description

Alicia’s condition is very bad. Just before Easter we received a confirmation of the worst – there is a need for an urgent surgery, without which Alicia will be at risk of a complete paralysis. Throughout last year the disease has progressed a lot. Collapses on a street, ambulances, hospitals, drips, endless medical tests – that’s how our daily life began to look like. Today we don’t have much time left – we realize what’s it going to be like if we don’t have the surgery on time…

Alicja Marciuk

Jarek, Alicia’s husband: Almost a year ago Alicia started to feel very bad. We have gone through dozens of medical tests, consulting doctors and testing various drugs. All for nothing, all medical test came back normal and week by week Alicia was just getting worse. I had an impression that doctors are so powerless as we were. I was so afraid – especially that Alicia’s sister died at age of 25 and the reason behind it remains unknown. I was out of my mind thinking that’s something like that would happen to my wife. I tried not to think so, but worst scenarios were coming to my mind anyway. I began to write to various specialists across the world and so, step by step, we’ve got to know the diagnosis. Alicia suffers from Superior Odontoid migration (SOM) and Rotary Atlantoaxial Instability (AAI), which leads to a cerebellum and spinal cord compression. Her health condition is really serious. We don’t have much time left to save her, since there’s a huge risk of a paralysis causing death. The only solution is an complicated neurosurgical surgery! Without a surgery, the symptoms will worsen: unbearable pain, intestinal palsy, seizures, dysphagia, difficulty in breathing, paralysis or mortality due to sepsis.

Alicja Marciuk

Alice's case is complicated, because there is a suspicion that he suffers from three other serious, chronic diseases. These are rare diseases and there are not many specialists in the world who are spatialized in this. Alicja is currently in the process of diagnosis. It is important to do as many tests as possible before the surgery.

Kasia, Alicia’s friend: On my eyes a terrible disease has been sucking life from Alicia. I remember how scared I got, when first I really felt I am losing her. I had an impression, that there is a totally different person standing in front of me. A person with no more passion, smile and energy. In the past Alicia used to travel a lot, she was an active journalist, making reportages and conducting trainings. Now she struggles to spell words, loses memory, falls asleep during a conversation sometimes. She has problems to breath and not to die during sleep and to be able to function somehow during daytime, she has to wear a cervical collar all the time. She must spend almost whole days in bed. She can’t walk anymore without getting tired and weak …

Alicja Marciuk

Maja, Alicia’s sister: We have lost one sister already; no doctor could help Monika… Medical test results were good and no one at a hospital was predicting that she’s going to die. These days medicine is at much more advanced level and we have to do all we can, so that Alicia gets a full diagnosis and the right treatment. Alicia is more than a sister to me. She has always been a lifeblood, a rock for the entire family, she’s has been looking after us since years. Anything bad happened to each of us (sisters and brothers), she’d know how to reach and talk to us. She’s like a harbor, a safe place, especially when we were turning into a wrong direction…

Alicia’s husband:  Her current condition is really bad… Her heart beats way too fast, even at a low effort. Every night means an unstable sleep and fear that this might be her last… A surgery is set to take place on May 24th. Diagnosis, although being really tough for us, has given us a hope that there is a rescue. At last someone understood that all symptoms are connected, at last there is someone who really wants to help us. Unfortunately, Alicia’s treatment is not refunded. She is going to be operated by dr Vicenc Gilete and his team at a Tekton hospital in Barcelona, Spain. He is really the only specialist in whole Europe who can help Alicia…

Alicja Marciuk

All our life savings as well as financial support from our families have been used on medical tests and consultancy abroad. Now we really have to ask for help, so that we safe Alicia on time. We don’t have much time left. We have to transfer 15% of total surgery cost until Apr 24th and the whole remaining sum until May 17th.

Spring time last year we had such beautiful plans and dreams. We wanted to go somewhere, Alicia was thinking of volunteering missions. She used to say that she’d feel 100% complete when she dedicates herself to others completely. Today we can think of one thing only – how can help Alicia and what can we do to be on time…

Please, help to save her life!

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