We are a French-American family with four children living in Paris, France. Mid-January 2020, from one day to the next, our happy lives were turned upside down. Our second child, Ella — 23 years old, beautiful, intelligent, with an undoubtable artistic flair — was diagnosed with an incurable cancer.
Ella had been experiencing headaches on and off for about six weeks and was treated by several different doctors for a sinus infection. One day her headache was so fierce that she couldn’t go to work. This led to an emergency MRI which revealed a tumor on her left ethmoid sinus pushing on the membranes around her brain. A subsequent biopsy showed that the tumor was “SMARCB1-deficient.” Diagnosis: SMARCB1-deficient sinonasal carcinoma.
Ella’s treatment started immediately, but her cancer was inoperable and entirely resistant to – if not accelerated by – the standard of care, chemotherapy and radiotherapy. Her health deteriorated so quickly over the following weeks that she didn’t have enough time to try the only other therapeutic hope that existed at the time, an FDA-approved targeted therapy called tazemetostat. At best, tazemetostat would have only given her an extra couple of months to live. Ella slipped away, barely three months after diagnosis, on April 24, 2020, with her parents and siblings by her side.
As parents who lost their daughter to a particularly brutal SMARCB1-deficient cancer, we cannot let our tragedy be in vain. We founded SMARCB1 Hope to bring attention to SMARCB1-deficient cancers and to support international collaborative research and new R&D approaches that will lead to effective therapies, and ultimately a cure.
Cassie & Jean-Baptiste Toulouse
Ella came into this world on October 8, 1996, full of love and energy and ready to roll. She was an artist through and through, though never claimed to be one despite herself and her work. Much of her work we discovered only after she died — hundreds and hundreds of inks and gouaches she had kept to herself, carefully stashed away in her closet.
Ella’s original mind permeated her entire being, from her quirky style and dress to her deep thinking, intelligence and solid principles to the dignity she showed when faced with the ultimate. Ella inspired many – in France, the US, the UK and Japan – on her circuitous path to becoming the extraordinary young woman she was.
Ella is unforgettable, mysterious, a bright shooting star. She continues to light our way.
Artworks by Ella Toulouse
The graphic design and graphic elements punctuating this site were inspired by the art of Ella Toulouse, from her series Mouvements colorés