Why Mikaeel’s Story Is Also a Research Story
It took Mikaeel six years before he could eat without fear.
For most of his early childhood, food meant pain. Cystic Fibrosis had gone undiagnosed for so long that his small body learned to associate eating with hurt — a connection no child should ever have to make, and one his parents fought hard to undo. In a video shared this week, Mikaeel’s mom describes the years it took to get a correct diagnosis, after doctors initially dismissed CF because they believed it didn’t affect children like him.
His story is heartbreaking. It’s also, sadly, familiar. Across South Africa, CF is still too often diagnosed late — after damage to the lungs and digestive system has already taken hold, and after families have already endured years of unanswered questions.
This is exactly the gap our partnership with NWU’s Centre for Human Metabolomics (CHM) and the National Metabolomics Platform (NMP) is working to close.
What the Partnership Actually Does
Through this collaboration, CF patients in South Africa can contribute samples and health information to the CHM Rare Disease Biobank. That data feeds directly into research aimed at understanding CF more precisely — including the kind of work that, over time, builds the case for earlier and more reliable diagnosis through newborn screening.
It’s not a quick fix. Research like this moves carefully and takes years. But every sample contributed today is a small piece of the evidence base that could mean a future Mikaeel is diagnosed in his first weeks of life, not his 2nd year of life.
How You Can Help
If you or someone you love is living with CF and want to learn more about contributing to the biobank, reach out to Albe Swanepoel at Albe.Swanepoel@nwu.ac.za. It’s a simple way to turn lived experience into research that protects the next child.
Watch Mikaeel’s story. Share it. And if you can, consider being part of the research that helps make stories like his rarer.
For more information, please visit: https://nationalmetabolomicsplatform.co.za/bio-bank/