When you first meet Frédérique, you’d never guess that her daily routines are far different than those of most 12-year-olds. This energetic pre-teen, who sings pop tunes at the top of her lungs even though it bugs her two brothers, also creates dance choreographies, loves drawing pictures, and dreams of travelling the world. She has a contagious laugh, natural empathy and says that dance restores her to full strength.

But since birth, Frédérique has lived with primary ciliary dyskinesia, a rare genetic disorder that affects the cilia in the lungs. Each of her days has started with respiratory treatments, daily medications and regular injections. Her many hospital stays turned family life upside down. Long days in the hospital, medical appointments, and school absences became a reality with which she learned to cope.

What has the hardest part been for her? Having her PICC line inserted before a hospital stay. It’s a process she dreads every time, but faces up to with the comforting presence of her mother by her side.

Today, a huge victory punctuates her journey: it has been two years since she was last required to stay overnight in a hospital. Thanks to advances in research and new home treatment options, the burden of her illness is now lighter. She can sleep over at a friend’s house if she wants, attend classes more regularly, and live life more like other girls her age.

When asked what she prizes most in the world, Frédérique replies: her best friend, and her family. Her two older brothers have a special place in her heart. Arthur is always by her side when she’s in the hospital, while Louis knows just what to say to comfort her.

The two things Frédérique wants most: to heal, and to travel the world. Meanwhile, she demonstrates remarkable determination, fuelled by hope that research will one day find a cure. And each step taken in the last two years reminds her that her hope burns more brightly than ever.