In a lifetime, no one can be prepared for news like this.
Ours changed on September 30, 2019 when we learned of Arthur's disease.
Very quickly, two solutions are available to you: either give up and drop everything, or raise your head and fight for Arthur, for his twin brother Jules and for all those around us.
We chose the second alternative and it is in this sense that we decided with the help of our close friends to create this association in order to overcome this new daily life differently and to help research on diffuse intrinsic pontine glioma.
With these lines, it is not a message of sadness that we want to convey but rather of hope, humanity and solidarity. This support, this kindness, these attentions, this generosity, this presence that we receive every day are a breath of fresh air in the middle of this whirlwind of emotions.
If the creation of Les Etoiles Filantes seemed to us somewhat premature at the beginning, we quickly understood that it would be something extremely positive. Being in action has always been a driving force in our daily lives and all this energy that emerges in the actions that we are going to carry out with the Association help us to support Arthur and Jules a little more calmly in this ordeal.
With all the people involved in Les Etoiles Filantes who represent different moments in our personal and professional lives, we know that we will go far, very far and that together we will add life to the days if we do not add days to life.
Sandie & Alexandre
After 8 months fighting like a superhero, Arthur left to join the stars on May 27, 2020. At every moment, he gave us a lesson in strength and courage, a lesson in life quite simply. The solidarity, the love, the tenderness that Arthur has managed to unite around him are all engines that have allowed us to support him until the end of this ordeal. Thanks to him, we have been able to add life to the days, failing to add days to life. It is up to us to continue, all together, to make it shine and to support all the other children affected by this disease.
Learn more about the disease
Each year, 50 cases of DIPG (Diffuse Intrinsic Pontine Glioma) are diagnosed in France.
What is DIPG?
DIPG, or diffuse intrinsic pontine glioma, is a type of brain tumor found in an area of the brainstem known as the pons. The name diffuse intrinsic pontine glioma describes how the tumor grows, where it is found, and what kinds of cells give rise to the tumor.
This type of brain tumor is very rare and mainly affects children from 5 to 10 years old.
To date, these diffuse and infiltrating tumors are inoperable and there is no effective treatment for this cancer. Generally, radiotherapy is chosen to treat the tumor in the short term but this has only a transient and palliative effect.
DIPG is an unpredictable disease, which evolves quickly and the outcome of which is generally fatal within 9 to 12 months following the discovery of the tumor.