A giant tumor in Szymek's head that needs to be removed as soon as possible! Surgery in Germany is the only chance for help!

Our son was born on March 25, 2018 as a picture of health. We were only worried about the swollen right eye. We reported it to the doctors, but they reassured us that the swelling would go down, it was the result of a difficult birth and nothing more to worry about. Back then, we didn't even suspect how brutal the truth would turn out to be for us. 

Days and weeks passed and the swelling did not go down. We kept hearing from the doctors that everything was fine. However, our intuition told us to keep looking further and investigate. Finally we got the diagnosis that was the just beginning of our difficult fight, the road through torment.

This was not swelling, but protrusion. We search the Internet for possible causes of it - it's possible it's a haemangioma! The heart stops for a moment with fear... MRI shows a much crueller truth – it is not a haemangioma, but a brain tumour! We hear the location is difficult location and the doctor’s need to operate! They don't do it in Poznań (south west of Poland), so we are sent to Szczecin (north of Poland). 

Subsequent tests show that the tumour is not growing. So there will be no surgery, due to Szymek's age - he is only 8 weeks old - doctors recommend regular check-ups, mainly to determine how much time we have and for our son to grow up - in such a small child, a surgery for a cavernous sinus tumour is very risky!

Unfortunately, another MRI shows the progression of the tumour and a few days later, on September 4, 2018, Szymek is operated on for the first time. He wakes up in perfect condition, without paresis, only the eye is heavily swollen and does not open completely. When leaving the hospital, the swelling is gone and we are assured that the eyelid will also return to its pre-surgery condition. The histopathological result of the tumour is optimistic: benign tumour, hamartoma. The eyelid, however, still only opens halfway, which speeds up the next resonance.

Unfortunately in October we learn that the tumour grew back, and due to such a rapid progression, the prognosis is very uncertain! This is not the kind of news we expected.... There is a decision on the next operation, the date of which is postponed 3 times. Finally, the operation takes place in April 2019. Unfortunately, the follow-up MRI shows that the tumour is growing again!

Tumour samples are sent to Germany for testing. The test results leave no illusions - plexiform neurofibroma. Everything becomes clear... The spots of the colour of white coffee on Szymek's body, together with this type of tumour, clearly indicate that he is suffering from a genetic disease - Neurofibromatosis type 1! The disease does not run in the family. De Novo mutation... Cruel bad luck.

Since the results from Germany, we have been recommended numerous MRIs and the eye looks very bad. We already know that it will have to be removed, we are just waiting for the "green light" from oncologists.

We got approval pretty quickly, so we're looking for one. We've been everywhere. From one doctors we hear “There is no option”. From the other one that they will operate, and then they said they cannot operate.  We even had two surgery dates and both were cancelled. A year and a half of asking and searching, until finally we hear: "What do you expect?"

This deprived us of any illusions about the effective treatment of our son in Poland. We started looking for help abroad. We sent the documentation to the clinic in Tubingen, to Professor Schuhmann - an outstanding neurosurgeon who is also a specialist in Neurofibromatosis! We thought that it might work out, that he might be the person who would help our son.

On December 19, 2022, we had a meeting with Professor Schuhmann and Professor Krimmel at the clinic in Tubingen. They agreed to operate on Szymek! We don't have a quote on surgery, however, after the operation Szymek will need a very expensive medication.  The cost of therapy alone is about PLN 3 million! In addition, there will be the cost of surgery and stay in Germany. Probably hundreds of thousands more on the top of it. 

We don't have that kind of money... That's why we're asking for help. We would like to ask you to support our Szymek! He has already suffered so much fighting for his life. 

We see our son as the most beautiful boy in the world, but he already notices he is different. He says he would like to have a nice eye like other children. We believe that he has a chance for a happy life. Please help us make his disability less visible. that he would still be such a joyful child full of life. Only with you on board it can be successful!

We sincerely thank you for all your help, also in the form of shares.

Szymek's parents