The only chance to save Kubuś’ s life is this Innovative treatment!

My son suffers from a terrible disease. Tumors form in his body. They have already attacked the urinary tract and reproductive organs. They grow very quickly, there are more and more of them! They can become malignant tumors at any time. Chemotherapy and radiation will not help anymore... The only hope is treatment with a new medicine. It is a hope that has been introduced recently. My son may be the first child in Poland to benefit from this treatment, paving the way for other patients. I am asking although it is hard to ask - help to save my son’s life…

When Kubuś was born- so big, strong, and beautiful- no one suspected the tragedy that would soon take place. In the third month of his life I noticed strange spots on his body. The dermatologist described them as coffee with milk and said that I should not worry and just keep an eye on it. Nothing was happening, so vigilance has been dormant. Until one day…

Kuba was almost a year old when I noticed the first tumor. On his first birthday he had the surgery. We felt relief after histopathological examinations - it was not cancer, only a tumor with inflammation. At that time, I did not know it was just the beginning …

However, blood tests showed inflammation, and the search for the cause began. It turned out that there is very big thickening of the bladder walls and direct risk of renal failure! We immediately went to the hospital in Zabrze, so it turned out that my son’s prostate was the size of a grapefruit. Everyone was shocked… We heard from a doctor that Kubuś is „an old man in a young body”. It was not possible to operate on the prostate because the son was too small. The catheter was inserted but then it was even worse! Kubuś went through 5 surgeries, many biopsies, a dozen or so anesthesia. Everyone focused on saving the kidneys and finding the cause of an enlarged prostate that compressed internal organs. And there were also these spots ... 

Today I know that this is a clear sign of a terrible disease - type 1 neurofibromatosis. That was the final diagnosis … It is not known whether we - the parents - are carriers or if any of the genes mutated in Kubuś’s body. We have two healthy older sons, there were no similar cases in our family. In Poland there are over 100 people suffering from a form of this disease. Until now, treatment is only symptomatic - those tumors are being cut out. Some survive up to 30 operations, while others die in infancy. There are no two identical cases...

In February there was an MRI scan, which showed new tumors at the lumbar cross and reproductive organs. The kidneys are still at risk. There are still new changes. Over time, they can become malignant! My son is suffering. Kubuś has painful varicose veins and a cystostomy - the weekly replacement is a horror... Kidney problems caused hydronephrosis and reflux. Every day brings Kubuś a huge dose of pain... His weakened body is becoming less and less opposed to this illness…

And when we were on the verge of a breakdown, the doctor and the professor from the hospital in Katowice told us about innovative, but still experimental treatment in the USA, which brings excellent results. There is a hope! Our wonderful doctors contacted the clinic in the USA, sent all Kubuś’s documents. A case conference took place, where it was confirmed - Kubuś’s tumors are inoperable. Chemotherapy will not help; radiotherapy cannot be carried out. The only hope is the medicine - it will stop the disease; it can also remove all the tumors!

Such treatment lasts a minimum of 3 years. Monthly cost - PLN 62 thousand. Doctors are constantly completing all formalities for the Ministry of Health to agree to bring the drug to Poland. At the same time, efforts are underway to start treatment in the USA as soon as possible - without wasting time. Kubuś cannot wait. Every day is dangerous for him …

It is extremely difficult to ask for help for the first time... to overcome shame and all fears and to tell my story ... I will, however, fight with all my strength, because I know that this is our only chance ... Therefore, in an act of desperation I turn to you, probably a complete stranger to me, for help for my son. Please, help to save my child ...

Kubuś’s mom, Gabrysia