Bethlem myopathy is a rare genetic muscle disorder that primarily affects skeletal muscle and connective tissue. It is characterised by muscle weakness and joint stiffness, often leading to difficulty with movement and physical activity. There is currently no cure for Bethlem Myopathy, and 12-year-old judoka Marta is living with what she describes as a specific mutation in her gene. Despite this fact, she joined the judo family, following in her brother’s footsteps.
While some people experience only mild symptoms and remain mobile throughout their lives, others may have more significant impairments. The condition tends to progress slowly and some people can have a relatively normal life expectancy with appropriate management and care.
The regression of Marta’s physical abilities had already begun, from a 4-5 year old jumping on a trampoline, to a wheelchair-bound Marta, who is remarkably fluent in four languages. Since joining regular judo classes, Marta has felt the improvement in many ways;
My muscles get weaker and weaker over time no matter what, but judo helps me to strengthen them a bit, so I think my muscles would be weaker than they are without judo. Maybe it helps with a certain level of maintenance I would say.
Apart from the physical benefits, I am also happier since I started doing judo. The people I meet become my friends and I like hanging out with them and everything, at school I always sit in my chair with all the energy inside me and I can’t let it out, but at training I can let all the energy out and I feel better.
At school I don’t talk a lot to people, I have like one or two really close friends that I talk to and only them, but judo has also helped me to socialise more and has boosted my confidence a lot.
I also really enjoyed the mixed training in Poreč, I think it is great because I can make new friends. I will get better at judo during the training and the coaches help me if I can’t do something, they help me to do it in my own way.
Marta entered the judo world as an adapted judoka and there are challenges she faces on the mat too. She shared her biggest obstacle on the tatami;
Maybe the fighting element, because I love when we fight in training, it’s great, but it’s getting harder for me. The challenges just get bigger over time, but it still helps me a lot. I still love judo, it is great. I can’t pick one part I just love it all with all the elements.
The word “extraordinary” is a gentle way of expressing Marta’s greatness, while also demonstrating the profound impact such individuals can have on the world. She may be afflicted with a rare genetic disorder but rest assured that this young spirit-filled individual will continue to be fuelled by judo. She faces it all, she reaches high and she does it her way. Marta is not a typical 12-year-old, she is much more. An imperfectly perfect girl with the heart of a lion who has a lot to teach the judo family as well as the rest of the world.
Images: Carlos Ferreira
Author: Szandra Szogedi