The story of Natasha Sahana Chahal
June 4, 2013 is a day I will never forget. We received the earth shattering news that our first born son, Jahan, had Duchenne Muscular Dystrophy.
Jahan had a weakness, something I think in my heart I could see early on, but something I maybe did not want to accept. He was always a little smiling, playful monkey, probably one of the sweetest, best behaved children I have ever known.
At 15 months I approached my pediatrician and expressed my concerns that Jahan was still cruising and not quite walking on his own. She explained to me that it was just a matter of timing and all toddlers developed differently.
That mother intuition, something we all have eh….follow it!
I just could not let it go, I had to go back to the doctor and be persistent. My doctor then sent Jahan for blood tests. We were unsure of what they were looking for at that time. The results showed he had high CK enzyme levels, which basically means muscle damage/leakage into his blood. What that meant, i didnt know, but ofcourse went down the google rabbit hole and couldn’t wrap my head around what that could mean.
We were then referred to SickKids for further testing. I remember it like it was yesterday. We sat in this room in the Genetics lab at Toronto’s SickKids hospital. The Doctor came and softly said “your son has Duchenne Muscular Dystrophy”. We had never heard of it before so the pediatrician went on to explain. We were told it’s a progressive muscle wasting disease, there were no treatments, no cure & 100% fatal. Boys are mainly affected, 1 in 3,500. Mothers are normally carriers, but that was not always the case.
We sat there absolutely traumatized with this awful news and I did everything I could possibly do to fight back the tears, especially in front of Jahan. He just could not see me cry. Harjinder was so quiet but I could see the pain in his eyes, and that his heart was broken for his son.
She went on to explain to us he would slowly lose his ability to walk by the time