Every new day means ascending yet another peak.

These widely-opened eyes did not know yet how hard a life might be.

My name is Kuba. I came into the world on January 2, 2000. Initially, my life was exquisitely promising; all of a sudden, however, everything fell apart. The trigger of my disease was the third dose of a polio inoculation. My motor activity regressed, and everything made a step backward. I visited several doctors – to no avail, though. Finally, the verdict came: a spinal muscular atrophy, type 1 (SMA I). For my beloved ones, this meant a shock, despair, and disbelief. Nobody could figure out at that point what really awaited us: the awareness of the illness and what it can do was very low. We had to struggle for every little thing on our own.

I cannot walk, as the neurons in my spinal cord making the muscles work are degenerating. Consequently, my muscles are increasingly debilitated and affected by dystrophy. Also my diaphragm muscles are exposed to atrophy – and so, in the night, I have to use a non-invasive respirator to help me breathe.

Rehabilitation and physiotherapy is the only way to decelerate the progress of my illness. This implies a monthly expense of around 2,000 zloty. My capacities are severely restricted. I am dependent, in everything I do, on all-day-and-night-long assistance of another person. The three operational fingers of my left hand is what I can contribute – plus, of course, my brain, which makes me a pretty good student, with a predilection for languages.

By moving my three fingers, I can operate my electric wheelchair.

In January 2012, I was operated on and had implants inserted into my backbone to inhibit the progress of a scoliosis and improve my respiratory efficiency. Those were tough moments for me, and for my parents too. The operation took as long as eight hours. Afterwards, a real lot has changed, and my breathing has definitely improved. Unfortunately, my right hand has lost its mobility. It has been so hard for me to accept it – with all the incessant stabbing and tingling pain it caused. I have almost stopped feeling my right hand. I mentally broke down….

My hand has never regained its former mobility. It was not long ago that I could write using it – now, it is but memories….

I have been experiencing a load of hardships over the seventeen years – always hoping for an efficacious cure. All this has made me mentally older compared to the others of my age. My and their perspectives definitely vary.

My desire is to have my life changed, at least a little. Therefore, I should like to ask you to help make my daydream to get recovered come (at least partly) true.

A medicine has recently been developed – and admitted by the U.S. Food and Drug Administration as well as by the European Medicines Agency – which can stop the progress of SMA. The bad news is, the drug is exorbitantly expensive. The annual cost of its application equals 540,000 euros. In my particular case, since my backbone has been operated on, access to the spinal cord is obstructed – and no European clinic can overcome this obstacle. The only hope remaining for me is to visit the United States. There, such injections are carried out with use of a special machine that is coupled with an X-ray device, which enables extremely precise pricking and dosing of the medicine.

Let me tell you in more detail what I should like to do after I successfully collect the money I need to initiate the treatment:

– pay for the air fare, to and fro;

– once there, rent a customised car to enable me to move from one hospital to the other;

– rent a flat while I am there;

– cover the cost of medical consultation at the hospital in Baltimore;

– pay for the examination qualifying for administration of the drug.

If you want to learn more about me and my life, do please visit my blog at www.kubolandiasma.blogspot.com.

Thank you for your understanding and help!