Amom has shared 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 changes in a protein in the body that helps keep muscle cells intact.
According to the Muscular Dystrophy Association, DMD affects approximately 6 out of every 100,000 people in Europe and North America (MDA). Symptoms can appear as early as 2 or 3 years of age, with lower external muscles typically weak before spreading to the upper body.
Jumping, running, and walking may be difficult for a child with DMD. Later in the illness, as the illness progresses, the heart and respiratory muscles are affected, resulting in impaired pulmonary function 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.”
Alex was able to stand and walk short distances until November 2021, when he began asking for more assistance and telling his mother that it was impossible for him to stand.
“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 is a professional negotiator and motivational speaker who says having difficult conversations is 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.”
Mehrabi and her husband devised a plan to inform Alex while their daughter was being cared for and they would not be disturbed. They started with a few questions at breakfast.
“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.”
“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.”
However, after much deliberation, his parents decided not to inform him that the condition is fatal or that he may die young as a result 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.”
The family is still fighting for the best treatment for Alex, and Mehrabi’s sister-in-law has recently launched a GoFundMe page to assist them in financing FDA-approved treatment that is not covered by their insurance. The goal is to raise $250,000 to help Alex get the treatment he requires, which has already been met halfway.
“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.”