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Please help safe Kaba's life!

Jakub Jankowski
Fundraiser finished

Please help safe Kaba's life!

Fundraiser goal:

Research and treatment in San Francisco - the only hope to overcome DIPG

Fundraiser organizer: Fundacja Siepomaga
Jakub Jankowski, 10 years old
Łódź, łódzkie
DIPG brain tumor
Starts on: 05 April 2019
Ends on: 31 October 2019

Fundraiser description

Half year – This is the length of time we have been trying to get the right diagnostic tests. Unfortunately, we have found out that our child is dying ... Half a year - that's how much life he has been left, if we do not do anything. There is a tumour in Kubuś's head, the worst possible diagnosis, a glioblastoma. That is the verdict. In Poland he has a few months of life ... however, we have a new hope, new clinical trials and treatment in the USA! Medicine is moving forward and it means that Kuba can live if we collect a large amount of money ( 2 million PLN (466 000 Euro)) ... We only have a short time until June and we beg for your help!

We had a brain biopsy in Zurich as no one in Poland wanted to operate. The examination confirmed our worst fears: DIPG (tumour) in his brain with the H3K27M mutation, which is the size of a mandarin and is inoperable. Our story is a dramatic one, but we strongly believe in a happy ending ... We want our story to be an example, but also a warning to other parents who are fighting or will fight for the lives of their children in the future ...

Jakub Jankowski

It started innocently, in June last year, when we were making a photo for our son's passport. The photographer asked him to look directly at the camera. On the photo we noticed something strange – Kubuś right eye was wandering in the wrong direction. We went to an eye doctor who recommended glasses. However this wandering of his eye did not appear suddenly. We were still searching for other causes ... So we saw another specialist who recommended exercise and, if he is not better in 2-3 years, then we had to go back to him. In spite of everything we felt very anxious ... The family doctor (GP) stated that there was no indication for MRI or CT scan on his head and sent us home.

Weeks passed, Kuba felt worse and worse. He walked like a small child and he leaned against the wall. When he started limping on the right foot we reported to A&E. The CT scan did not show anything (it turned out that it would not show anything because the tumour was too deep). The other doctors dismissed the other symptoms and said that everything was fine with Kuba then they gave us a copy of the discharge report, nothing else, and we came back home. That calmed us down a bit we thought that if so many doctors were investigating our son and everyone said it was good, maybe we are exaggerating and we are just paranoid.
We would have liked it to be true, unfortunately Kubuś became more and more lame and in the meantime the kindergarten directed us to psychological and research to find the cause of weak muscle tone. We finished it in January this year and found ourselves at the starting point ... We were back again with our family doctor (GP). The doctor was shocked that we do not get any diagnosis. But how could we get it when everyone sent us back with nothing?! We read on the internet that the symptoms Kuba was experiencing also fits with a diagnosis of Lyme disease, so we had some testing performed. These excluded the disease, but then we got even more worried ...

We went to another specialist, this time privately. He finally gave us a MRI scan in December! We asked for an urgent referral, but he replied that it was impossible because the symptoms had appeared a long time ago. We felt as if we were at the center of some tragic comedy ... In a huge sense of helplessness and regret we went to A & E again. We said we will not leave until they make a diagnosis and do all the research and that if we need to, we'll call the police, the TV and everywhere we can. They received us with grace, but the most important thing was that Kuba finally had the research done. The neurologist immediately suspected that something was wrong. We asked if the symptoms point to a tumour. She confirmed, and it turned us cold ...

Jakub Jankowski

Because of this the doctor ordered urgent tests scheduled for the next day. Finally, after many months we had an answer ... The Senior Doctor invited us to her office, which meant that it was very bad. We prayed that it would be an aneurysm, something that could be removed. But it was something much worse ...

Kuba has a huge tumour in his head - that's all we knew. If it cannot be removed they can offer us chemotherapy and radiotherapy. We are confused, how do they know what to do without even taking a biopsy? Unfortunately, this is the treatment protocol in Poland and we only had a few days to make a decision. In the meantime, we found a forum for parents whose children have DIPG. Thanks to the people on the forum who helped us we feel we have had the support to make the right decisions for Kuba and we are grateful to them.

Kubuś's diagnosis was made on February 14th and a day later a special clinic in Zurich was opened where Dr. Sabine Meller works. She is a doctor who has been researching DIPG for 25 years. We managed to raise the money needed for the biopsy which could not be done in Poland. On March 22, Kubuś went into surgery and soon afterwards doctors confirmed our worst fears. Full diagnostics are ongoing – specialists are currently checking the tumours DNA and its molecular structure. However, we already know that we have only one chance to save Kuba.

Jakub Jankowski

Dr Meller and clinical specialists at the University of San Francisco are conducting clinical trials and developing a modern treatment method for Panobinostat in liquid form, which is administered directly to the tumour. This drug is currently available only in the USA. In order to start treatment and research, we must have a security deposit of $500,000... How much therapy and the real cost will only be known to us when we are in the US.

Kuba has now started radiotherapy in Warsaw in consultation with the clinic in Zurich. After 6 weeks of radiotherapy and MRI scan, and when everything is going well, we have to fly to the USA and start treatment there. So we have until June to collect a gigantic amount to save our child's life. Kuba feels OK at the moment as he is not undergoing chemotherapy and is not too weak, which increases his chances. Doctors advised him to continue in kindergarten to keep him in the best mental condition because shortly the fight for his life will begin ...

Please, help us get Kuba well and free him from Cancer so he can regain a normal life

Dorian and Dominika /Kuba's parents/

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