What is it?
An inherited condition that mainly affects the central nervous system. It often appears in babies or young children, although it can sometimes develop later.
A story of love and courage
Moving forward with Lana,
one little step at a time.
We share Lana’s daily life to raise awareness of Leigh syndrome, support research and give strength to every family affected by it.
Every donation, share and message helps us move forward.
Togetherlet’s make the invisible visible
1 in 40,000births in France
A rare diseasestill far too little known
A communityrallying around Lana
Our purpose
Turning every step forward into a shared victory.
Hello everyone!
My parents created this website so you can follow my progress, share my little victories and, above all, learn about this rare disease. Behind every milestone is a great deal of love, courage, appointments and a determination to keep hoping.
Sharing this website, talking about Leigh syndrome or following my adventures are simple actions that make a real difference. The more of us there are, the further our message can travel.
Thank you from the bottom of our hearts — Lana and her family
Understand
Leigh syndrome
Raising awareness already helps the cause move forward. Here are three key facts to better understand this rare neurometabolic disease.
What are the symptoms?
They vary in severity and may include low muscle tone, motor difficulties, loss of acquired skills, and problems with balance or coordination.
What treatments are available?
There is currently no specific cure. Vitamins and cofactors may be offered to support mitochondrial function.
Claira Run · 2026
A new adventure
Lana sets off in an all-terrain wheelchair.
A first outing filled with emotion, smiles and unforgettable memories.
Thanks to the Alice et les Petits Guerriers charity, Lana was the first of many little warriors to ride in this all-terrain wheelchair. Her smile, her discoveries and the joy of sharing this adventure with her family will remain a precious memory.
Illness or disability should never prevent a child from discovering, laughing and enjoying wonderful adventures.View all photos
Raise awareness
The media help our voice travel further.
We speak with journalists who want to shine a light on Leigh syndrome and the daily lives of affected families. Articles, reports and interviews all help raise public awareness.
Contact us
In the press
One mission: raising funds for medical research
Read the articleTake action now