A rare disease. Two children. A daily fight.
Mia and Titouan are affected by an orphan genetic disease.
A rare disease that is rarely talked about… but dictates their daily life and that of their whole family.
25,000 km a year for care and appointments.
5 physio 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 entails on a daily basis.
For Mia, a trip to the operating room about 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 numbers, above all, there are two children.
Two children who want to laugh, play, go to school, run, dream… and live their lives like everyone else.
It is for them that we created the non-profit organization Nomitou.
Our mission: to raise awareness of rare diseases, support families, and help improve their care and daily lives.
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, keep moving forward despite the disease.
Alone, we go fast. Together, we go far.
