A 7,000-mile journey for hope: French family finds answers in Monroe

MONROE, La. (KNOE) - Benjamin loves sensory toys, loves to laugh, and loves to move. If you watch the 12-year-old long enough, it’s hard to believe doctors once told his family there were things he might never do.

Behind his smile is a battle most people will never understand.

Benjamin, who goes by Benji, went to hospitals regularly during the first three years of his life. Doctors could only confirm he was developmentally delayed until one phone call changed everything.

“The geneticist called me and she said, I’m not allowed to tell you on the phone, you have to come to the hospital,” said Sophie Guede, Benjamin’s mother. “That was probably one of the most scariest days of my life.”

A diagnosis that left a family alone

Benjamin was diagnosed with KIF5C, a single gene mutation that robs the brain of its ability to communicate with the body. The incurable disorder affects only 30 out of 8.3 billion people in the world.

“That’s horrible. Because we felt so lonely,” Guede said. “We thought, oh my goodness, what are we going to do?”

Benjamin’s family had been searching for answers for years, crossing borders, consulting specialists, and hitting dead end after dead end in France. His father, Samuel Couvreux, remains in France to support the family financially, visiting Monroe when he can. Guede cares for Benjamin and his younger brother, 8-year-old Valentin Couvreux Guede, who does not have the disorder.

Filled with questions and nowhere else to turn, Guede crossed an ocean to find answers.

Finding hope in Monroe

“When I came here, I realized that everything was possible, everything was possible,” Guede said.

For most of Benjamin’s life, there was no hope until Dr. Karl Kaufman at Glory Day Therapy in Monroe began treating him.

“Sometimes he’s very determined and I have to be very determined right alongside him so that we both try to achieve our goals,” Kaufman said. “Because I think ultimately his goal is to have more independence and he’s demonstrating that sometimes when he’s telling me let’s not do that.”

Kaufman has treated Benjamin for months at a time since 2022. The progress has been real.

“It’s really been an amazing blessing to see how much progress Benjamin has made and to think about all the things that he’s going to be accomplishing,” Kaufman said.

Benjamin is learning to do things doctors once said were impossible, like playing in a differently abled soccer club league.

“Kicking the ball for the first time and there were everybody, well, doing this and at that time I thought to myself, well, now he is existing,” Guede said. “I mean, socially, he’s not seen as a disabled child, but he’s seen as a child.”

A family’s mission

Outside of therapy, Benjamin is just a kid. Curious. Full of life. Always finding a reason to smile.

“He’s very happy. Always very happy,” Guede said.

His younger brother Valentin said Benjamin works hard every single day.

“I think people don’t realize how strong he is,” Valentin said. “And I love playing with him and listening to music.”

After a recent storm, Couvreux received a video from Benjamin’s physical therapist that left him stunned.

“This year, I was very proud of him,” Couvreux said. “After the storm, when the PT sent me a video, I couldn’t believe that he was walking alone.”

To fund Benjamin’s treatment and raise awareness, his family launched a nonprofit called Happy Benji.

“I thought, okay, that is my goal. This is the goal of my life, and I will do all I can for that,” Guede said. “We started Happy Benji because we don’t want another family to feel as alone as we did. If we can connect people, raise awareness, raise funds — maybe the next child diagnosed with KIF5C won’t have to travel seven thousand miles to find help.”

For Benjamin, every step forward is a victory. Now, he’s just getting started.

For more information on Benji and his story click, here.

For those who want to donate click, here.