Cursed with cancer - save Adrian!

Update 27.02.2024:

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Thank you VERY MUCH to EVERYONE who supports in various ways the fundraiser for our son Adrian.

Thanks to YOU, Adrian is already taking the medicine!!!

We are surprised by how many people cheer for Adi and support us. Every kind word is a boost of energy for Adrian, motivation to act, and a better mood.

We are immensely grateful for actions that bring us closer to achieving the goal.

You are wonderful! Thank you!

🇬🇷 

Σας ευχαριστούμε πάρα πολύ όλους όσους υποστηρίζουν με διάφορους τρόπους τη συγκέντρωση κεφαλαίων για τον γιο μας, Άντριαν.

Χάρη σε εσάς, ο Άντριαν έχει ήδη αρχίσει να παίρνει το φάρμακο! 

Μας εκπλήσσει πόσοι άνθρωποι στηρίζουν τον Άντι και εμάς. Κάθε καλή λέξη είναι μια ώθηση ενέργειας για τον Άντριαν, κίνητρο για δράση και καλύτερη διάθεση. 

Είμαστε απεριόριστα ευγνώμονες για τις πράξεις που μας φέρνουν πιο κοντά στην επίτευξη του στόχου. 

Είστε υπέροχοι! Σας ευχαριστούμε από καρδιάς! 

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My name is Adrian, I am 16 years old. Today I am asking for help for the first time in my life. I’m fighting cancer already for the 4th time, but I can't beat it alone. Behind me are many years of struggles in various cancer hospitals. Due to the very rare CMMRD syndrome, I have a genetic predisposition to cancer.

Currently, I’m facing a malignant brain tumour - an inoperable glioma.

Since last summer, I have undergone multiple courses of radiation therapy and chemotherapy. Unfortunately, the last MRI clearly showed that the current, standard treatment has stopped working.

To stop the disease, I need treatment with a special anti-cancer drug – an IDH1 mutation inhibitor.

Unfortunately, it is very expensive - over 70 000 PLN (€ 16 100 / $17 300) per month. It’s currently unclear how long I will have to take the medicine for. The purpose of this fundraiser is to secure my treatment for the next few months. It is difficult to say yet what will happen next.

This drug is the only chance to stop the glioma – and I have to start the treatment as soon as possible. There are no other options left. This is my only chance and hope, so if you’re reading this – can I please ask for your support? I still have so many dreams and plans. Cancer has already taken me so many years... I believe that this treatment will give me the health and strength to carry on. With your help, I will be able to achieve it! Please, can you share this appeal and, if you can, help cover the costs of my treatment? I will greatly appreciate every donation, no matter how small.

Thank you so much for taking the time to read my story and for every share and donation!

From Adrian’s parents:

Our 16-year-old son has already gone through several lifetimes’ worth of health struggles and trauma. His medical documentation fills up several dozens of ring binders. One young man and already four cancers …

Despite such a baggage of experience, Adrian never wanted to be defined by his illness, never expected a leeway or sought extra attention. Many people around him have only recently learned about everything he has been through. Adi puts in a lot of effort to live each day as best he can. He loves the game of pool and his two dogs, which he says are the best thing that ever happened to him. He loves to build his Lego collection and play Uno with his loved ones. We are very proud of him because, despite the fatigue and physical pain, he motivates himself with all his might to learn (through homeschooling), never complains, has a great sense of humour and is empathetic.

Adrian’s story

Adrian's story cannot be described in a few words. After all, how can one fit the days, weeks, months and years of suffering of one person - first a child, then a teenager – in a few short paragraphs?

The hospitals, fear, pain, countless cycles of chemotherapy, surgeries; then, a moment of hope and yet again, another dramatic diagnosis. An ongoing rollercoaster of emotions.

2010-2012

At only 3 years of age, Adi was diagnosed with B-cell acute lymphoblastic leukaemia. This was followed by complications after 2 years of harsh treatment.

2014-2016

Another battle with a malignant tumour - T-cell lymphoblastic lymphoma. It was a huge tumour in Adi’s chest. Adi was only 7 years old at the time. No one suspected a genetic disease yet. Our son was on the verge of life and death. He went into respiratory failure and was in a coma for two weeks. The prognosis was bad, but treatment brought positive results. The tumour shrank and the remaining bits of it were successfully removed during a difficult operation. However, there were many complications - a compression fracture of the spine, heart problems, osteoporosis, thrombosis.

However, the big shock to the family came with the results of genetic tests conducted abroad. In 2015, Adrian was diagnosed with the extremely rare Constitutional Mismatch Repair Deficiency (CMMRD) syndrome, which occurs in only 1 in 1,000,000 (1 million) people.

Living with CMMRD is like living on a ticking bomb. One must constantly be on one’s toes and perform tests to detect new malignant growths as early as possible and respond as quickly as possible.

2017 - 2020

Things were looking seemingly stable and for a brief moment, we reached a peace of mind. Adrian went back to school and tried to live as any boy his age. Despite the many hospital stays, constant check-ups, tests, treatments and all the stress that comes with them.

Our son found a new passion - he developed a keen interest in billiards, spent many hours training and participated in competitions.  Until the cancer returned...

2021

We were hit by a recurrence of B-cell acute lymphoblastic leukaemia, 5 years after the end of lymphoma treatment. For the third time, our world collapsed. Adi had to return to the paediatric oncology ward. This time, in addition to chemotherapy, a bone marrow transplant was required. Luckily, we were able to find an unrelated donor. Our son got another chance at life.

Unfortunately, 3 months after the bone marrow transplant, Adrian ended up in the hospital again for several months with very serious complications – GVHD (graft-versus-host disease) of the gut and skin.

He was hooked up to intravenous nutrition for 2 months. He was unresponsive to steroids and immunosuppression, and customized biological treatment was required.

Unexpectedly, Adi suffered from a massive haemorrhage, which was miraculously brought under control. A doctor and a nurse watched over Adi all night, while ambulances kept delivering more and more bags of blood for him. It was very bad, but our son once again persevered, he survived! He returned home and slowly recovered.

2023-2024

Due to the many years of harsh treatment, necrosis developed in Adi’s thigh bones – the bone tissue started to waste away. Our son had serious problems walking. To regain his mobility, he exercised intensively with the help of physiotherapists.  Physical therapy had started to bring encouraging results.

During this time, Adi underwent numerous tests, including an MRI of his head. Its result was another blow to us. We received a diagnosis of severe brain cancer - an inoperable glioma. A biopsy showed a high degree of malignancy.

In September 2023, Adrian underwent radiotherapy combined with chemotherapy, which stopped the disease for a while. Unfortunately, this proved insufficient to effectively stop the growth of the glioma.

After numerous consultations and recommendations from foreign specialists dealing with CMMRD patients, and with the approval of Adrian's attending neurooncologist, we decided to include an innovative anti-cancer drug, an IDH1 enzyme inhibitor, in the treatment regimen.

This is the only chance to stop the disease. Unfortunately, this new medicine is not covered by the Polish public healthcare system and costs over 70 000 PLN (€ 16 100 / $17 300) per month – an overwhelming amount for our family.

We believe that with your help Adrian will manage to stop the glioma! After all he has been through, he deserves the opportunity to get the best possible treatment and pursue his dreams like any other teenager.

If you’ve read this far, thank you so much for reading Adrian’s story. We appreciate it is a big ask, but if you’re able to – please help our son. Every little helps, so please donate what you can and share this appeal. We will be extremely grateful for every contribution, small or large. We are putting our hope in you.

Thank you from the depths of our hearts.

Adrian’s parents