Dubai woman's fitness challenge to inspire son with incurable disease

Alexandre, 12, has Duchenne Muscular Dystrophy, which has no cure

Lousin Mehrabi, 40, with her son Alexandre, 12 who is wheelchair-bound due to a condition called Duchenne Muscular Dystrophy (DMD).

A woman in Dubai whose son has an incurable condition is on a 45-day fitness challenge to build up the strength to carry him and inspire him to keep on with his daily physiotherapy sessions.

Lousin Mehrabi, 39, a corporate negotiator from France, wants people to join her in dedicating 45 minutes a day for 45 days to develop a fitness routine.

Ms Mehrabi told The National her goal was to be able to lift Alexandre, 12, who has Duchenne muscular dystrophy (DMD), which causes his muscles to break down.

“He is confined to the wheelchair and he cannot stand on his own or walk,” she said. "I have to lift him from the wheelchair to the car and to his bed. And every time I did that, my back hurt."

Ms Mehrabi said she started training last year to build the strength required to carry Alexandre, who now weighs 30 kilograms.

“He is going to get heavier and heavier, and I need to be stronger,” she said.

There is no cure for DMD, a genetic disorder characterised by progressive muscle degeneration and weakness.

It is caused by a mutation of a gene that controls the production of a protein called dystrophin, which plays a big role in maintaining the membrane of muscle cells.

The disease primarily affects boys, with most requiring a wheelchair by the time they become teenagers.

Moving to Dubai for sun

Ms Mehrabi moved to Dubai in 2017 with her husband, after Alexandre was diagnosed with DMD when he was six. She has a daughter, Elise, who is nine.

“The doctors said there was nothing much to do except give him plenty of sun and beach,” she said. "We could not think of a better place than Dubai to relocate."

Dubai's policies towards people with disabilities have helped the couple to adapt quickly to life in a new city where Alexandre is now also at school.

But his condition has deteriorated. He could walk and even run slowly when they first moved to Dubai.

“The disease started doing its job and his condition is declining," Ms Mehrabi said. "He is even finding it difficult to lift a glass of water."

She said the biggest challenge was telling him last year about his condition.

“I had to tell him that it still has no cure. And that the disease, that has robbed him of so much, will only get worse.

“I wanted to tell him because I did not want him to Google and find out [that way].”

But since she and her husband broke the news, Alexandre has been calm and accepting, she said.

He now receives daily physiotherapy sessions and the mother faces the challenge of helping him to stay committed.

“It is not easy for him to get motivated knowing that his condition will deteriorate anyway," she said. "I want to set an example by showing him that I am also doing my fitness routine, though I don’t like it."

At 39, she said she hit the gym with the aim of building enough strength to carry her son.

“I have always been slim and healthy. But when I first started lifting him, I realised my muscles were not strong enough. I hired a personal trainer and started working out," she said.

Ms Mehrabi said she committed to the challenge by developing a daily fitness routine.

“I have been going two-three times a week for the last 18 months. But I still hate it," she said.

“I often skip sessions and when I was on holiday last month, I barely worked out,” Ms Mehrabi wrote on her LinkedIn account, a week after she started her fitness regime last month.

Since then, she said she has been working out every day for 45 minutes and several people have joined her.

“It can be a simple walk, yoga or swim. But I want to turn it into a habit and I am so glad many people have joined in and pledged to do the same," she said.