The only way to achieve the impossible is to believe it is possible.

Forward, walk !

Portrait de Benjamin

A child unlike any other... but like any other, a child !

Benjamin is the only child in France with a rare genetic disorder linked to a mutation in the KIF5C gene. Our association's goals are to help him walk and gain a better quality of life, while promoting the KIF5C mutation for international medical research.

 

Today, only about 30 cases are identified in the world.

Patients in the world

(zoomer/click icons to display number of cases)

Interactive World Case Map
France Germany Luxembourg Spain Italy Norway Poland Argentina Brazil India Pakistan Russia Japan Vietnam United States United Kingdom

France

1 patient

Germany

3 patients

Luxembourg

1 patient

Spain

1 patient

Italy

2 patients

Norway

1 patient

Poland

3 patients

Argentina

1 patient

Brazil

3 patients

India

1 patient

Pakistan

1 patient

Russia

1 patient

Japan

1 patient

Vietnam

1 patient

United States

11 patients

United Kingdom

6 patients

Fundraising

Help us to raise funds !

Costs related to Benjamin's medical care in a clinic in Louisiana.

Intensive care in Louisiana

Expenses related to Benjamin's stay for several months in a clinic in Louisiana (therapy adapted to his genetic disorder).

Forward, walk !

Blog



Experience the highlights of the association with us !

We are mentioned in the press.

We are pleased to share the articles recently published in the local press, a valuable relay to raise awareness about rare diseases and to give visibility to the actions of our association. Thanks to the press correspondents of the...

Everyone on the soccer field for Benjamin!

A magnificent show of solidarity, kindness, and humanity shared together at the Garennes stadium this sunday, december 7 ! It was a very emotional sharing and we were deeply moved by your expressions of support. A big SHOUT OUT to the FC Louet-Juignéen who organized this superb match, to Claire Supiot, to all the parents who baked (delicious) cakes, to everyone who came to cheer on and support HAPPY BENJI : forward, walk ! and to the players who gave their all on the field. Our struggle is no longer a solitary one, but a solidarity one.

In 2023, what made us decide to continue therapy

From Benjamin's early testing, we see the effectiveness of these innovative therapies and are convinced that we must continue to care. The progress is obvious if we compare the 2024 videos with those, a year earlier !

Back to Glory Therapy !

Last year, we flew 7000 thousands miles away from our French house to have therapy for 3 weeks in GLORY THERAPY. We met a great team and an incredibly talented man named Karl Kaufman who changed...

1000.65 feet walking in a row during 1 hour :

« The only way to realize the impossible is to believe that it is possible ». Today, June 12, 2024, Benjamin realized the impossible by walking 1000.65 feet in a row !!! He took short breaks but got up and walked for an hour !!! Only 3 months after the...

Proud to be able to walk

👏 After two and a half months of therapy, Benjamin is proud to show us how much progress he has made!!! He is now able to walk with help, heading to the places he wants to go. Guidance is done by maintaining a resistance band that...

HAPPY BENJI !!!

Come on Benjamin!!! Motivation with a smile as always!!! Benjamin loves this colorful painting and likes to stop in front of it every time. In case nobody told you today, hello, nice to see you, you're in your place here, you're doing very well, we...

First experience outdoors with a walker

Today, May 15, 2024, first outing with a walker. Benjamin must manage his environment, soil differences, wind, sun...🌈 BRAVOOOOOO

Holding onto the walker

For the first time since the beginning of therapy, Benjamin managed to stand and move a few steps while leaving his hands on the handles of the « walker ». It is just unbelievable to carry out these 3 actions separately and even more...

Automatic stepping reflex for the first time

Today 11 April 2024 is an EXCEPTIONAL day because Benjamin engaged the reflex of walking, a reflex that infants have at their birth and that is tested after a few days of life. The aim is to test the vertical holding of the newborn in such a way as to...