Wafic’s Story

Soon after Wafic from Lebanon was born, his parents realised something did not seem quite right. After having spent a worrying few months in hospital units – undergoing multiple biopsy procedures and taking different blood and genetic tests – Wafic was diagnosed with Duchenne Muscular Dystrophy, a rare and incurable genetic disease.

Duchenne Muscular Dystrophy starts in early childhood and affects approximately 6 per 100 000 children, mostly boys. The disease affects muscles, which get progressively weaker, and makes it difficult for a kid to jump, run, and walk. It can also affect the spine and present respiratory problems.

Wafic’s family must rely on support from a wide range of services and organisations to help him get through the day.

Today, Wafic is a twenty-year-old young adult, who feels extremely lucky to have the medical care and support he needs. However, this has not always been the case. When Wafic was first diagnosed, his parents found themselves completely alone. They received no support and no explanation of what Duchenne muscular dystrophy was. Healthcare professionals confused them with their recommendations and there was no one to answer their questions.

Wafic strongly believes much more needs to be done for people who have rare diseases and movement disorders including improved accessibility to school, work and public places.

“There needs to be increased awareness about rare diseases,” he says. “Access to medical care is a basic right and governments should better support people living with rare diseases, including medical care, therapy and equipment needed for a better life.”

As the disease has progressed, Wafic has felt his muscles weakening. He is now unable to stand or maintain his balance. Furthermore, raising his arms has become much more difficult and he has become much more dependent.

“These days, I need support for all daily activities, from getting up to going to bed,” he says. But this hasn’t stopped him enjoying his life to the fullest. He is passionate about cars and likes to stay up to date about the latest models. He also enjoys going to the cinema and playing video games with his younger brother.

It is this strength and positivity that inspired his parents to start an association supporting families and patients diagnosed with neuromuscular diseases. The Lebanese Association for Neuromuscular Diseases helps spread awareness about the difficulties patients and their families experience from the moment their child is diagnosed with a neuromuscular disease. It also supports these families in sharing and discussing their problems, providing them with all the latest research and therapy developments.

Wafic is grateful to his family for providing unconditional love and support, which have enabled him to inspire and cheer up everyone around him. “I’m comforted when I feel all the love and support around me. I’m a positive and happy person who’s able to live, love and be loved; to dream, to enjoy my time, and to live a happy life. It’s my right!”