'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 the boy's mom.
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?"
"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."
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."
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