Alveolar rhabdomyosarcoma! Lilou needs support for her treatment!

The diagnosis that changed everything in a matter of weeks

It all began in January 2024 with severe hip pain. Leukemia was initially suspected, and treatment was initiated with that diagnosis in mind. However, further diagnostic tests revealed the true, much more serious cause: a highly aggressive sarcoma with extensive bone marrow involvement. The disease was severe from the outset, and treatment had to be adjusted immediately to save the girl’s life.

More than two years of treatment abroad

Lilou is undergoing treatment in Germany, in Berlin and Tübingen. She has already been through a great deal: multiple cycles of chemotherapy, a specialized local procedure on her affected leg, surgery to remove the primary tumor, radiation therapy, and maintenance therapy. She has also been enrolled in an experimental immunotherapy program. Her case has attracted the attention of researchers studying this rare cancer, giving her family hope that Lilou’s experience will help other children in the future. Unfortunately, in June 2026, a recurrence of the disease was confirmed, this time in the area around the eye socket. Preparations are currently underway for further specialized treatment, and the family is doing everything they can to ensure that Lilou can benefit from modern therapies and clinical trials available abroad.

A Life on the Road

The illness robbed Lilou of a normal childhood—school, friends, and carefree days—which she misses dearly. Lilou’s mother, who is raising her daughter alone, is by her side twenty-four hours a day, which caused her to lose her job. This deprived the family of a steady income. The situation is further complicated by the lack of a reliable car; in emergencies, they have to rush to the oncology clinic by taxi, trembling with anxiety over whether they’ll make it in time. All of this was made even worse by a fire that destroyed their home in 2024. Every day is a struggle not only for Lilou’s health, but also for the survival of the entire family.

The quiet space Lilou needs

Lilou is a child with extreme sensory sensitivity, which is why she needs complete silence and darkness to recover. Her family is trying to create a safe, peaceful space for her where she can rest and regain her strength between treatment sessions. In the current unstable situation, this is a huge challenge, but for Lilou, it is simply essential.

A girl full of passion

Lilou loves music—she plays the piano and sings. She paints, loves horses and equine therapy, and has even tried windsurfing. Above all, she is an incredibly empathetic child who always looks out for others on her own. To her loved ones, she is simply a ray of sunshine, and it is to this life—full of passion and joy—that she longs to return with all her might.

Let's help Lilou keep fighting

The funds raised will go toward what matters most to Lilou: non-reimbursable medications, modern and experimental therapies, participation in clinical trials, safe transportation and long-distance travel to hospitals abroad, creating a quiet space for recovery, and psychological support. Every donation gives Lilou a real chance at another treatment option and pain relief, as well as the opportunity to still be a child and experience moments of simple joy. Let’s help her keep fighting and regain what she loves most.