A rare disease. Two children. A daily fight.
Mia and Titouan have an orphan genetic disease.
A rare disease that is rarely spoken about… but which dictates their daily life and that of their entire family.
25,000 km per year for care and appointments.
5 physiotherapy sessions each week.
25 medications a day between the two of them.
A growth hormone injection every evening.
An ileostomy for Titouan, with everything that involves on a daily basis.
For Mia, a trip to the operating room roughly every 6 weeks for her neurological treatment.
An adapted school life, absences, medical appointments, and constant organization to allow them to continue learning and growing.
And behind all these figures, there are, above all, two children.
Two children who want to laugh, play, go to school, run, dream… and live their life like everyone else.
It is for them that we created the non-profit organization Nomitou.
Our mission: to raise awareness about rare diseases, support families, and contribute to improving their care and daily life.
Because an orphan disease should never mean being alone.
❤️ Today, we need you.
A donation, even a small one, allows us to continue this fight.
For Mia. For Titouan. And for all the families who, every day, move forward despite the illness.
Alone, we go fast. Together, we go far.