Faith, Perseverance, and the Courage to Fight Rare Grade 4 DMG Gliomas When No Other Options Available

Before ECCT (2024) vs After ECCT (2025)

Currently, there are no FDA approved or NCcN-Compendium recommended treatment options for patients harboring this variant.

In 2023, Aqeel was diagnosed with a rare and complex brain tumor in the left thalamus—a deep and sensitive area of the brain where surgery carried significant risks. He bravely underwent chemotherapy, radiotherapy, and had a VP shunt placed to relieve hydrocephalus. Although initially classified as a low-grade glioma, a follow-up DNA sequencing study confirmed that Aqeel's tumor is a high-grade glioma (Grade 4).

H3-3A K28M (also referred to as K27M) is a hotspot mutation and is associated with adverse prognosis in adult and pediatric glioma patients (NCCN.orS). This variant is diagnostic of "Diffuse midline gliom4 H3K27 altered", WH) grade 4. Currently, there are no FDA approved or NCcN-Compendium recommended treatment options for patients harboring this variant.

Despite intensive treatment, the tumor progressed, spreading to the right cerebellum and causing new lesions. Each MRI brought mixed results—small improvements were often overshadowed by new challenges. His condition became more unpredictable, and hope began to dim.

With few options remaining, his family made a courageous decision in March 2024 to try ECCT alongside low-dose chemotherapy. It marked a turning point. Over the next few months, Aqeel began to show signs of improvement: the lesions reduced in size, the pressure in the brain eased, and MRI scans showed improved ventricular conditions. Though his progress has been slow, it has been steady—and deeply meaningful.

Today, 14 months post ECCT treatment, Aqeel is gradually recovering day by day and the family as well engaged with a physiotherapist to help regain strength and function.

Now, more than a year later, Aqeel turning 17 next month and still remains with his loved ones—an outcome that once seemed out of reach. Every day is a gift. His family believes that it is through faith, followed by perseverance, love, and the courage to explore alternative therapies like ECCT, that they have been granted renewed time and hope. They share this journey to inspire others and to show that even in the face of overwhelming odds, there may still be a path worth fighting for. Aqeel and family would like to encourage all cancer fighter, especially those who Fight Rare Grade 4 DMG Gliomas out there to have faith in Allah's plan, for perseverance follows the strength of belief.