Mom Shares How She Told Son, 11, His Disease Has No Cure: 'Keep Fighting'

A mom has shared the reality of the heartbreaking moment she had to tell her 11-year-old son that he has a degenerative genetic disorder.

Lousin Mehrabi lives in Dubai, United Arab Emirates, with her son Alex, who was diagnosed with Duchenne muscular dystrophy (DMD) three days after his sixth birthday in June 2017.

DMD is a genetic condition that causes progressive muscle degeneration and weakness due to alterations of a protein in the body that helps keep muscle cells intact.

In Europe and North America, DMD affects approximately 6 in every 100,000 people, according to the Muscular Dystrophy Association (MDA). Symptoms can begin as early as 2 or 3 years old, with lower external muscles usually experiencing weakness before spreading to the upper body.

A child with DMD may have difficulty jumping, running, and walking. Later, as the illness progresses, the heart and respiratory muscles are affected resulting in impaired pulmonary function which can lead to acute respiratory failure and death.

"My world crumbled," recalled Mehrabi speaking to Newsweek: "Until a few months prior to diagnosis I had never heard of DMD. I thought my life was over, that I would never feel joy again. I felt I didn't have the strength to take care of a child with such a severe condition."

But the same day the family received the diagnosis, Mehrabi explained she told her son exactly what the doctors said: "I shared it with him like almost good news," she said: "Alex, we finally know why it's difficult for you to run fast, we finally know why you get tired from walking long distances. It's because there's a problem with your muscles. So now that we know, we will adapt.

"I told him everyone has challenges in life and this is your challenge. And everyone is here to help you. He was only six of course so I didn't tell him that there is no cure yet, that it would only get worse and that life expectancy is limited with this condition."

Until November 2021, Alex was able to stand and walk short distances, but around that time he began asking for more help and telling his mom that it was impossible for him to stand anymore.

"When he lost the ability to walk and even stand, we noticed that he started being more sad and down," Mehrabi said. Because of his change in mood, Alex's parents arranged for him to see a psychologist who eventually told them it was time to tell their son about the severity of his illness.

"I didn't want him to go on Google and read about this devastating disease, so I knew it was indeed time to tell him," explained Mehrabi.

Mehrabi herself is a professional negotiator and inspirational speaker, and said difficult conversations are part of her job. But this one felt different: "How on earth do you tell your child that his disease is fatal?" she said. "That there is no cure? That it will get worse and worse until he dies?"

She prepared for the conversation for almost a week, often crying when thinking about it. "There was no way out. I had to tell him. I wanted him to hear it from me and not someone else. I wanted him to stop thinking it was his fault that he couldn't walk."

Together with her husband, Mehrabi made a plan to tell Alex while their daughter was being taken care of and they would not be disturbed. At breakfast, they started with a few questions.

"Honey, do you know that Duchenne is a very severe condition?" they asked. "That it is progressive, do you know what progressive means? We shared that Duchenne breaks down his muscles, that we have muscles everywhere in our body so it would continue to break down other muscles so he might lose other body functions too."

"We also told him that this was absolutely not his fault and that there was very little we could do but that we would do everything we could to slow down the progression as much as possible," she said. "That doctors and scientists all around the world are working hard to find a cure and that one day they will and Duchenne will be healed. We just don't know when yet and until then we will continue to enjoy life and do whatever we can do to keep you as healthy as possible."

They also spoke to Alex about his emotions and the stages of grief, writing down the Grief Cycle of Kubler-Ross on a piece of paper.

"I told him that it was totally normal to feel whatever he is feeling," Mehrabi said. "That news like this might feel like a loss."

After a long reflection, though, his parents decided not to tell him the condition is fatal or that he might die early because of DMD. "Because who am I to take away hope?" Mehrabi said. "Science advances very fast and maybe a cure will be found in his lifetime. I need him to stay joyful and focus on what other children his age focus on."

Mehrabi said Alex listened carefully as they explained the illness to him. "There was a sense of deep wisdom," she said. "As if he already knew on some level."

Mehrabi said she felt a great sense of relief after their conversation. "I felt it brought us closer together. Me and my husband for having to go through this together and us as a family for being transparent and honest about it, without losing hope that a cure is still possible in his lifetime."

On World Duchenne Awareness Day, September 7, Mehrabi shared the story of telling her son about his illness on LinkedIn in a bid to raise awareness. That goal was reached as almost 7 million people viewed the post which has gained viral attention on the social networking site.

In the post, Mehrabi touchingly wrote: "There is still a lot of work needed in research, advocacy and fundraising. One day a cure will be found. Until then, we'll keep fighting."

The family continue to fight for the best treatment for Alex, and Mehrabi's sister-in-law has recently launched a GoFundMe site to help them to finance treatment that is FDA approved but not covered by their insurance. The goal is to raise $250,000 to help Alex get the treatment he needs, a target that has so far been halfway reached.

"When we share our stories of adversity, we connect with people on a deeper level. All masks and titles fall off," Mehrabi said. "And we realize we all have more in common than we have differences. We should connect to that more and resolve conflict peacefully."