My only dream is for Wiktoria to live after my death

I still can't believe that in our family of four, which was until recently just 'normal' and average, three generations are suffering from a serious and incurable diseases, which have taken away my daughter's happy childhood and our previous lifestyle

My daughter, Wiktoria, was born in April 2019, on time, after a series of successful prenatal tests, as an only, much-awaited child of our dreams. However, all the joy was soon overshadowed by the fact that everything went wrong from the very beginning. She suffered constantly from colic, food intolerance, SI disorders, atopic skin, did not meet any developmental milestones, couldn’t sit, couldn’t walk, couldn’t speak, did not communicate, had problems swallowing, and thus eating and drinking, never slept through the whole night for over two years, cried constantly and got into bouts of hysteria difficult to soothe, which to us, her parents and grandmother, was just heart-breaking in our overwhelming feeling of helplessness. After dozens of tests, hospital examinations and treatment attempts, she was diagnosed with severe form of autism and non-specific neurological symptoms. After months of autism therapy sessions, she began to open up to the world very slowly, when another blow just came unexpectedly.

In March 2021, after a viral infection, I started to feel really unwell and found myself in hospital, with horrifically bad blood results. Fortunately, the team of specialists at the Nephrology Ward of the University Teaching Hospital (USK) at Borowska Street in Wrocław quickly diagnosed AHUS and saved my life at the last minute, or at least, certainly prolonged it.  AHUS, that is, Atypical hemolytic uremic syndrome is an extremely rare, life-threatening, progressive, autoimmune disease that frequently has a genetic component, just like in my case. This is an autoimmune disease, incurable, with unknown prognosis as well as electrifying and fatal consequences. Within a few days of my body's auto-immune attack, I just lost my kidneys completely (end-stage chronic kidney disease) and, for the sake of saving my life, I was sentenced to dialysis 3-4 times a week and almost living in hospital. What seems important to me in my story is that I had never been seriously ill or had ever any kidney problems before, I had followed a healthy diet and a generally healthy lifestyle all my life, without any addictions. A difficult pregnancy and a viral infection seems to be enough to trigger such a cascade. Thanks to the heroic fight of the doctors, after 6 weeks of effort and an unequal battle for my health, I was granted treatment from the National Health Service with Soliris, one of the most expensive drugs in the world, thanks to which, by administering it every 14 days in the form of drips, my life is prolonged, which is also necessary for the rest of my days. One dose of Soliris currently costs 30,000 PLN and I need to be given 4 doses every 14 days till the end of my life. After months of research and genetic tests, it turned out that I was born with four genetic mutations that predispose me to this disease. So I am one of the thirty-something people with this syndrome in Poland. What's more, I received a kidney transplant in April 2022, the second successful AHUS kidney transplant at USK hospital, and the first, let's keep our fingers crossed, successful AHUS kidney transplant from an unrelated dead donor, which allows me, may it be for as long as possible, to live without dialysis. The specific nature of AHUS, unfortunately, also implies the possibility of the transplanted kidney being attacked by my body, so I enjoy every day of my life like a child, especially a day without pain, and I try with all the strength I have left to make sure that Wiktoria’s days are happy and smiling and that she remembers me as such.

My illness has, sadly, resulted in my sudden absence from home for weeks and months in total, which in turn has caused enormous stress and regression of any of Wiktoria's existing skills and the need to work intensively from scratch. For Wiktoria to have any chance of progress and development and therefore a normal life in the future, she needs a calm and stable home, constant care and permanent stimulation, physiotherapy and, above all, occupational therapy. We are paralysed by the thought of what her fate will be after our death if she is not self-reliant. Wiktoria comes alive and thrives when she is being cared for 24/7 and properly stimulated, which is very challenging task even for a healthy person and requires great stamina and emotional balance. My child's illness hurts me personally much more than my own and all my thoughts and efforts are focused on being able to help her, to give her a chance to live as normal a life as possible. For her, I would like to live as long as it is possible in my condition. Unfortunately, having no other family, the only people left to help with Wiki besides me are her Dad and her Grandmother, that is, my Mum. Piotr is working beyond his limits in the present situation, mainly being away.  We all need his presence and help, but most of all he is missed by our little Wiktoria. For the sake of our disabilities, he is also our driver and logistics provider every single day.

My Mum, on the other hand, has been chronically ill since 2001 and is doing her best to help us and her only, beloved granddaughter, while she needs help herself. My mother developed Bipolar Disorder (BPAD - Bipolar Affective Disorder) in 2001, because of which she has a disability certificate, although she has strenuously worked a full-time job all her life, despite sometimes months of hospital stays. As if that wasn't enough, she was diagnosed with a malignant form of stage two and three breast cancer in 2009 and underwent two surgeries to remove parts of both breasts in the following years, as well as a series of chemotherapy and radiotherapy. After all these years of treatment and continuous medication for the rest of her life, she now also suffers from brain lesions, symptoms of dementia, dizziness, severe osteoporosis and progressive spinal degeneration. Mum has coped with her suffering incredibly bravely for many years, is now retired and receives some low pension due to the fact that through her illness she has mostly only been able to carry out simple administrative work, but now she requires constant care herself.

Up to now we have been just bending over backwards and managed somehow financially and logistically, which at this point has become less and less feasible, as we have sold whatever we could and used any savings, family support or insurance options for the last four years of our misfortunes, since I finished up lying in bed before Wiktoria was born.

Needing to buy all my and my mother's medicines in one month is a cost of around up to PLN1,500, if some infections come on top of that, it is up to PLN2,000. Plus the rising cost of commuting to the hospital, doctors and Wiktoria's therapy. I am dying of fear in situations where Wiki is left home alone with my mum while I’m on my regular hospital check-ups. Having no other family, I should hire a nanny. Sometimes I manage to beg my neighbour, although she also has a lot of duties of her own. So far, I have not succeeded in obtaining any help from the municipality or the Social Assistance Centre (MOPS) of the municipality of Trzebnica, in the form of care or transport, nor have I been able to refinance my commute; I have to travel 55 km one way to the hospital in Wrocław on a regular basis. I am permanently under post-transplant immunosuppressive treatment and due to the extreme risk of infection, I am therefore not allowed to go around the offices and knock from door to door.

We have managed to get help for our little Wiktoria from August 2022 from MSPDION (Milicz Association for the Disabled) in terms of therapy and exercises, however, this is another 25 km one-way of Wiktorka's continuous commute to Milicz, which we have to organise ourselves. Wiktoria and I, have to follow a specific diet. The progressive degeneration of my mother's bones and joints, which began as a result of cancer treatment, will inevitably involve removing architectural obstacles at home and creating conditions for a disabled person to function. Similar conditions (a shower base instead of a bathtub, no stairs, handles, handrails, special equipment, etc.) should also be available at this point for Wiktoria, who, after my series of treatments and operations, I am not allowed to carry, and who is not fully physically fit and is unpredictable in terms of movement and behaviour. All this clearly involves costs that we cannot afford at the moment. My mother should continuously undergo physiotherapy and psychotherapy, which she has not participated in at all since my illness started, due to lack of resources and logistics, making her condition worse. She is also being examined for the chance of using any hearing aid as she suffers from significant hearing loss since her treatment. Such a purchase could be another cost up to PLN10,000.

Your help is our last resort. You can help us by supporting us financially via Siepomaga Foundation website, being a Polish tax payer by donating a 1,5% of your tax in the Tax Return Statement or, simply, by sharing this site on your social media accounts. Every penny counts and brings us closer to buying our medicines every single day. You are just saving our lives!