Hello, my name is Monika. I am 20 years old and I have terminal illness that tries to take me from this world before my time… I don’t want to die yet… My last hope is a new medicine – it’s available in Europe, it is being refunded in some countries, it is already saving lives but… it is not refunded in Poland. One year of treatment is over a million PLN. My country decided that it is not practical to save my life at such a price. This is why, from the bottom of my heart I ask you now to help me. I have to pay for my life, and it costs a fortune…
I am alive because I am fighting for it – even though I could have been gone a long time ago… The first time I was hanging between life and death happened when I was a baby. I was dying. An innocuous infection turned into critical condition. Doctors broke my mother’s heart telling have I have no chances of survival… but then somebody suggested I might have Mucoviscidosis (cystic fibrosis). The diagnosis was confirmed when I was five months old. A proper treatment began and with it my new life – with an uncurable illness.
I do not know any other reality. Every day I wake up with an enormous weight in my lungs. Even before I begin my day, I have to go through a series of percussive chest physiotherapy sessions, inhalations and a handful of tablets. I am taking over 50 tablets a day! Oftentimes I was unable to get out of bed due to cystic fibrosis. Many people associate mucoviscidosis with lungs and the respiratory system, but it actually affects the entire body. It attacks lungs, intestines, pancreas, liver, stomach and kidneys. Lungs and respiratory system are under most pressure due to accumulating thick, sticky mucus that causes difficulty breathing as well as becomes a feeding ground for viruses and bacteria.
Up until a certain point I was able to lead a relatively normal life. The illness and fear were right there, but I’ve learned to live with it. Unfortunately, two years ago I had an infection. It was neither the first nor the last, but it was worse than before. It was followed by many others that drastically worsened my condition.
With every passing day, every week my lung capacity gets lower. I am aware that it’s not a process I can stop without a much more efficient treatment… To make matters worse, cystic fibrosis is accompanied by other illnesses that sooner or later develop in most mucoviscidosis patients, me included. I also have diabetes, kidney stones, an underactive thyroid, inflamed joints, osteoporosis, intestinal blockages, Bronchiectasis, pancreatitis, chronic sinus infections, depression, low blood pressure and chronic headaches. It’s a nightmare I would not wish on anyone.
Every time I get an infection, I am being given particularly strong antibiotics, which are not without side effects. Additionally, every day I have to exercise, get my chest physiotherapy and do my best to ensure my condition is as good as possible. I am under care of a team of great specialists. Unfortunately, it does not help. The illness is progressing.
My lung capacity is only 48%. I often have to receive oxygen therapy because my lungs just cannot do it. Hospitals are basically my second home… I used to dream I would finish school, study medicine, become a doctor. I also love cooking – it was another thing I could see my future in. Unfortunately, I had to choose – my education or my health. This illness took everything from me. My dreams, my plans… but the worst thing is that it is taking my life away.
However, a new hope arose. Near the end of August new generation of medication, that deals with causes, not symptoms of mucoviscidosis – they improve the efficiency of my lungs and other organs. Unfortunately, they are not refunded for polish patients. They can be bought commercially, with prescription in Chech Republic or Germany.
I am active in numerous groups and forums uniting people affected by mucoviscidosis from all over the world. I talked to people who were on the lung transplant list, but after a year of this new treatment it was not required anymore – their lungs would regenerate, enabling them to make an almost miraculous recovery and lead a normal life! These are patients from USA, where medicine with the same treatment has been available for a long time now.
This is a ray of hope for me and others who suffer due to this terrible illness!. Unfortunately, the cost of a yearly treatment is over 1.2 million PLN – that is the cost of saving a life…
I live thanks to the hope that I can make it, and my case will be the first of many in Poland, enabling other cystic fibrosis sufferers to have a better life… or just a life. I believe our politicians, after having seen the effects of the new treatment will work so that the life-saving medicine can be refunded in Poland as well.
I am blessed with wonderful doctors that help me fight for my life. The moment I gather this astronomical amount of money, they will get the treatment prescribed to me and my foundation will bring it to Poland, so I can start healing.
I am begging you, help me, because I can’t do it by myself. I am getting support from my family, my fiancé, but even if we sold everything we own, we would not have the money needed… My lungs are getting worse. I do not know how much more time I have. I want to live, I really want to live. Please help me…