Sacha, from France, was diagnosed with Primrose Syndrome at age three and a half, which helped our family better understand his developmental delay. By then, Sacha had already been receiving rehabilitation therapy since he was one year old, support that played a big role in helping him take his first steps just four months before his third birthday.

Today, Sacha is still waiting for a placement in a specialized school. In France, there are very few available spots, and he has been on a waiting list for four years. In the meantime, he attends a mainstream school in the mornings with one-on-one support. In the afternoons, he receives educational support at home with a special education teacher, an approach that is helping him make wonderful progress.

Sacha is a bright, affectionate little boy with a great sense of humor. He loves music, vehicles, books, lights, and hugs.

Like many families living with Primrose Syndrome, we also face hard days. One of the most difficult challenges for Sacha is behavioral dysregulation, especially when he feels frustrated or overwhelmed, which can sometimes lead to unsafe moments for him and those around him. With the right support, structure, and understanding, we keep working toward helping him feel secure, communicate his needs, and thrive.

Sharing Sacha’s story helps shine a light on what life with Primrose Syndrome can look like, and why families everywhere are pushing for better resources, more support, and a brighter future.