Hi, I’m Raffaela

Emilia Scriba and her family have been my neighbors since childhood. Heartbreakingly, the three children – Philip, Emilia, and Amelie – have been deeply affected by a devastating disease called POLG mitochondrial disorder.

Philip Scriba (08.05.2003 – 19.05.2023) was the oldest of the three. This spring, we lost another beautiful soul, Emilia Scriba (19.07.2005 – 18.05.2025), to POLG. Now, their youngest, Amelie, is bravely fighting this cruel disease.

I will race the HYROX Paris in honor of Emilia – to celebrate her joy, courage, kindness, and her incredible ability to find light even in the darkest moments of living with POLG. She was a truly happy girl, always putting a smile on everyone’s face and inspiring us all with the way she lived despite such a terrible disease

What is POLG?

POLG is a very rare genetic disease that damages the mitochondria – the tiny “batteries” inside our cells that give us energy. When they stop working, the body slowly shuts down. Over time, this leads to organ failure, affecting the brain, liver, and muscles. Sadly, there is no cure.

Because it is so rare, POLG is often hard to diagnose, poorly understood, and receives far too little funding for research!

This family is racing against time, holding on until science can find a chance for a cure, not only for Amelie, but for countless other people worldwide.

Every donation, no matter the size, goes directly to the POLG Foundation to fund research, bringing us closer to a cure, better answers, and new hope for families fighting this disease.

I race for Emilia. Together, we can help give many other children a future.

From the bottom of my heart, thank you for your support!!

Watch this video to meet the family and witness the reality of living with POLG:

Emilia:

Emilia and Amelie:

The whole family: