The real drama started in November 2017 and I could not even repeat the diagnosis. Rare genetic disease called PKAN-NBIA. I did not even realise that it might kill my child in a few years and that his life is in such a huge danger. This is extremely cruel disease, because it destroys my son unpredictable.
Adam’s disorder is characterized by abnormal accumulation of iron in the brain, where iron is not supposed to be. The most important parts of brain which are responsible for motor coordination, balance and muscle tonus are particularly exposed.
The disease causes brain cell death and gradual degeneration of the central nervous system. This was the diagnosis that no mother would like to hear: “it usually lasts 3-11 years from the diagnosis to death of the patient”. I could not accept this even for a moment. Adam has some problems with speech and concentration, but in spite of this and against all odds, he develops just normally, and we must find a way to deal with that cruel disease. Whenever I look at my cheerful child, it comes to my mind that he doesn’t even realise in how great danger he is. I will do my best to help my boy, to save him.
In Poland there is no possibility for treatment of Adam’s syndrome, but scientist from USA are in the middle of clinical studies for a new type of medicine that can help stop the development of the disorder. This is the hope for Adam. We cannot just sit idle and wait until the disease will kill our son. I must be ahead of disease before it will be too late. When the treatment is possible and to be qualified, Adam must maintain as much of his physical mobility as possible. We fight daily to keep his therapy going. Hours of rehabilitation, hours of hard work with specialist – this is everyday life of our little boy. Adam stands it with patience, he doesn’t remember the moment when his typical day would not be filled by exercises, rehabilitations, doctor appointments, therapy etc. However, I truly believe that thanks to Adam’s hard work, our love and help of people of good will, Adam will win the most important price – his life.
If we neglect and forget about some area of development, there will appear disease that will destroy my child. We cannot let it happen. I think about it every single day when I wake up and before I go to bed. I cannot give up. When my son succeeds, when he is proud of himself after learning something new, when I see smile on his face and happiness in his eyes – all that give me strength.
After years of therapy we are running out of funds and already know that we will not be able to finance his further rehabilitation and treatment by ourselves. So, I am asking for help in our fight with that cruel and unpredictable disease. If you feel you would like to assist us financially with even smallest amount, please know your deed is giving our child hope that he gets to live to see tomorrow. Please help me to save my child!
Thank you from the bottom of our hearts!