PHOTO. Suffering from orphan disease, Bastien Bulit dreams of 2024 Paris Games and sporting challenges
the important thing
Bastien Bulit, 26, is battling Hunter 2 disease, a pathology that stops growth and can cause heart problems. Originally from Paulhiac, near Villeneuve-sur-Lot, he set up an association with his friends to help as many people with reduced mobility as possible to participate in sports races.
Friendship and sport as ramparts against disease. Bastien Bulit is not the type to give up, nor will he allow himself to be overcome by the evil that has been consuming him for over 15 years. This 26-year-old’s journey is most inspiring. In his small village in the Lot valley, Paulhiac, he lived a peaceful childhood. “Football lover”, he trembles for the sport like any other boy of his age. Even after a few hours, he felt sick, out of breath with every workout. “I hardly made it” Bastien remembered. At the age of 10, the pain increased and he could see his morphology changing. A few medical appointments later, the diagnosis came down: he had Hunter 2 disease, a disorder that stops growth and can cause heart problems. “This is an orphan disease, there are not many cases in the world” supports Bastien. The doctors’ words about his future were hardly encouraging. He is being followed by a medical team in Lyon and he is receiving an experimental treatment, “to slow down the progression of the disease”.
Of course, the following years were not the easiest. “There was a negative spiral,” he recalls. But he is getting back on his feet, thanks to a fighting spirit, the support of those close to him and the surgeries that reduce his pain. After the installation of two hip prostheses, he slowly regained his taste for sports. And will be inspired by an athlete like no other.
1.8 million views for his meeting with Youtuber Tibo Inshape
Over the months, he resumed cycling and wanted to strengthen his muscles. At that time, a fan of gyms and sheathing caused a sensation on social networks: Tibo Inshape. The Youtuber is used to highlighting, through his videos, people with unusual backgrounds. February 2016, when he got his baccalaureate, he confessed to the “muscular videographer” about his illness and did some exercises in front of the camera. The video was seen by 1.8 million Internet users.
Today, he does “a lot of sports”, says Bastien with a broad smile. “It makes you reinforcement, and therefore fewer physio sessions.” He was educated near Sainte-Livrade, but it was with his friends from Villeneuvois that he would take another step. In particular to Alexandre Druet, his best friend, volunteer firefighter in Villeneuve and lover of running. Together with two other accomplices, they will participate, together, in “some race by feeling”. Bastien, placed in a joëlette – an armchair equipped with one wheel and two stretchers -, is pulled by his friends for several kilometers. In this arrangement, they complete the Foulées de Rives-Villeréal and the Foulées Monflanquinoises. Then they had the idea to create an association and “do crazy challenges”.
IronBast was born. The association wants in the future to allow other people with reduced mobility to participate in such sporting challenges and show that “it’s not because we have a disability that we can’t do these things.” The first step is to finance their own joëlette, a tool worth several thousand euros. Two quartet races are already planned for 2023, in Toulouse and Capbreton. But another horizon interests Bastien and his friends: the Paris 2024 Games and the general public event of the “marathon for all”. But the road will be long. “We have to adjust the preparation for Bastien” assured Alexandre. Not only that, because they also target triathlons and IronMan races.
Beyond the desire to “show other people with reduced mobility that it is possible”, Bastien Bulit intends to enjoy life and participate in the biggest competition in the world. As revenge for pain.