H3K27M-Mutant Glioma Story

**Today, I will not speak about regulations, but about a true life story, a story of a young man’s struggle to hold on to life. And yes, this story is not from the past but is ongoing, lived and felt with every moment. Maybe you are wondering; where am I in this story? I am right in the middle of it, living and feeling every moment...

Let’s begin...

Ali is eighteen years old, a young man full of hope at the beginning of life, with big dreams and boundless energy. Ali’s parents are farmers with a daughter and a son, leading a humble life away from the hustle and bustle of big cities and high-level acquaintances. They don’t know bureaucrats, ministers, or businessmen. They are people trying to hold on to life with their own efforts and sweat.

One day, I asked Ali, “What profession will you choose in the future?” Ali’s answer deeply moved me: “I will become an agricultural engineer. I will be a better farmer than my father. By studying agriculture, I will produce the best and most productive crops. In the future, accessing food will be very difficult, but I will do my job in the best way possible and become a world-renowned agricultural engineer,” he said. This deeply moved me because, nowadays, when asked, young people generally choose different professions; I had never heard a young person say they wanted to be an agricultural engineer, and I assured him that I would always be there to support him.

But one day, the family faced the harsh reality of life. Ali went to an eye doctor for an eye problem, and the doctor diagnosed that there was no problem with his eyes, but it might be related to the brain. This is how the family’s painful journey began. They immediately went to the nearest hospital in their area, and an MRI showed that Ali had a 3.5 cm mass in his brainstem, and they were advised to go to the nearest state hospital.

The family reached out to me, I got an appointment at the city hospital, and we crossed paths with Dr. Harun, an expert in his field. The doctor said an urgent MRI was needed, and we got an MRI appointment for a month later. The tense, fear-filled days seemed never-ending. A week before the appointment, Ali’s symptoms worsened, and his family took him to the city hospital urgently. During that period, the MRI appointment came. The MRI showed that the tumor had grown beyond 5 cm, and Ali was diagnosed with H3K27M-mutant glioma. When this rare and aggressive brain tumor settled in his young body, it felt as if our entire world had darkened in an instant. Ali’s hospitalization process began.

Ali was aware of his condition but did not show it to anyone. He would say, “I will not give up, I will beat this disease. With my zest for life, hopes, and faith in the future, I will overcome this difficult period,” and he tried to comfort his family. Such courage at such a young age.

Then, a pathology operation was performed. During the operation, Ali started experiencing swallowing, eye, and balance problems. The family, during the busiest time of their work in the summer, had left their work and were anxiously waiting, not knowing what to do. I was deeply distressed, trying to comply with the hospital procedures.

Then, the pathology result came. The pathology diagnosis was the same as the MRI result: H3K27M-mutant glioma. Dr. Harun said his responsibility had ended and referred us to oncology. We met with Pediatric Oncology doctor Dr. Neriman Han?m. This was a very difficult process for us; the situation deeply affected all of us. Pediatric Oncology doctor Dr. Neriman Han?m told the family perhaps the most painful truths of their lives: the truth that no parent wants to hear. She said that Ali’s disease had no cure, and he would only receive radiotherapy to extend his time. The parents were devastated, not knowing what to do. They were going through the hardest test of their lives. I was heartbroken but tried to console them, saying, “There must be a treatment method somewhere in the world, there must be an angel who will heal Ali.”

Ali, unaware of the result, started his radiotherapy sessions. I saw the light in Ali’s eyes. Walking through the corridors of Ankara City Hospital, I witnessed his struggle. Every session, every moment, was a battle for him. He was not alone in this battle; his family, friends, I, and most importantly, his strong will were always with him, but we were only extending the time.

Although I am a financial consultant, I was constantly researching global developments, sending emails to everyone, and messaging on LinkedIn. Then, I discovered that at the German Cancer Research Center (DKFZ), Prof. Dr. Michael Platten and his team, including Tamara Boschert and colleagues, were working on a peptide vaccine related to H3K27M and had tested it on 8 patients, with positive results in 5 of them.

This research gave us great hope; it was a new light, a new hope for us. Maybe Ali could be cured, and this bright young boy could reach his dreams. But we had a problem: how would we reach this team? I tried to reach the Turkish employees at the German DKFZ hospital, and my Turkish acquaintances in Germany, but I failed. No one was interested, as if they were saying, “Accept your fate.” Then I emailed the German DKFZ hospital, and they directed me to Prof. Dr. Michael Platten. I am someone who loves to challenge, so I did not give up.

I obtained the email addresses of Dr. Michael Platten and his team and sent an email explaining the situation. Dr. Platten responded immediately, which made me very happy. I excitedly opened his email, which said, “Unfortunately, the regulations do not allow for an exemption of the age criterion. In addition, we can only enroll German-speaking patients in this trial.” I was very sad. A child’s life was slipping through our fingers. But I was not going to give up; I would fight until the end. What will I do now?

1. I emailed Consul General @MahmutNiyaziSezgin in Karlsruhe to ask for help.

2. I will report the situation to the Presidential Communication Center (C?MER) to be forwarded to our President, @RecepTayyipErdo?an, and ask for help.

3. I will email our Foreign Minister, @HakanFidan, asking for his assistance.

4. I will send a message to our Health Minister, @Prof. Dr. KemalMemi?o?lu, asking for his help.

5. I will email our former Health Minister, @FahrettinKoca, asking for his help.

6. I will keep emailing @Dr. MichaelPlatten and his team until they accept us.

7. And I am asking for your prayers, advice, and help.

Can this story be one of how Ali held on to life with his dreams and faith, and who will be the angel to heal Ali as a result of this effort? With everyone’s help and prayers, I hope to share this beautiful outcome...**

#H3K27M T.C. Sa?l?k Bakanl??? T.C. D??i?leri Bakanl??? Avrupa Birli?i Ba?kanl??? T.C. Cumhurba?kanl??? Dijital D?nü?üm Ofisi T.C. Karlsruhe Ba?konsoloslu?u DKFZ German Cancer Research Center