A little girl, a big fight.

Our daughter Ellie is 6 years old. She has been fighting a brain tumor, a glioma with a BRAF gene fusion, for her entire life. She's visually impaired from it.

For 6 years, Ellie has lived through chemotherapy, surgeries, and long hospital stays at Queen's Silvia Children hospital in Göteborg.

Despite everything, she remains the joyful, curious little girl everyone falls in love with. Her courage amazes us every day.

Recently we received the devastating news: the tumor grew by 20% in 2 months, while under treatment. And we have now reached the end of available treatment options in Sweden for Ellie.

But there is still hope.

A treatment called Tovorafenib may offer Ellie another chance. Specialists at Gustave Roussy Hospital in France are able to provide access to this therapy. The medication is not yet approved by the EMA and its cost is exorbitant, estimated at around €300,000 - €500,000 per year and the treatment is needed for almost 2 years.

Seeking treatment abroad also comes with many costs that are not covered by the Swedish healthcare system. These include medical consultations, MRI and scans, labs, medication, travel between Sweden and France, accommodation near the hospital, and the practical costs of staying close to Ellie while she receives treatment.

Over the past 6 years, Ellie’s dad and I have both had to reduce our work significantly to care for her. Although we were finally able to return to full-time work in 2025, seeking treatment abroad will again mean taking extended time away from work and we no longer have the financial reserves to sustain us through it. Our employers cannot support us working from France. This means we will need to rely on sick-child leave while Ellie receives treatment, which will reduce our income drastically.

We are creating this fundraiser to give Ellie the chance to access this treatment and for us to care for her through it.

Our hope is that we will only need to privately finance the treatment and all the hospital & practical costs for about 12–14 months, until it becomes accessible through the Swedish healthcare system. Tovorafenib is currently under review at the European Commission which has 67-90 days to accept it and once approved, EU countries typically need an additional 6-12 months to negotiate pricing and reimbursement through their own healthcare systems.

With our own last resources + the fundraiser, we believe it will allow us to bridge that gap.

What keeps us going is knowing that the treatment exists and that Ellie has a chance to receive it.

Any contribution, no matter the size, would mean the world to our family. If you are not able to donate, sharing Ellie’s story would help us more than you know.

If we are fortunate enough to raise more funds than are needed for Ellie’s care, any remaining money will be donated to research working to find a cure for this devastating disease. We have not yet identified the organization, but our intention is that every extra euro will go toward helping children like Ellie in the future.

Ellie has been fighting with extraordinary bravery for 6 years. We are not ready to stop fighting for her.

From our hearts, thank you for standing with Ellie.

Jessica, Daniel & Ellie