Interview with araremoon

About a month ago, we received an email from a woman who reached out to us telling us that she was happy to see people from the Sikh community raising awareness for Muscular Dystrophy. Her name is Sarbjot Kaur (@araremoon), and her son Mehtab was diagnosed with Spinal Muscular Atrophy Type III, a specific form of Muscular Dystrophy. After a couple of emails back and forth about her story, I knew that I had to talk to her in person.

I ended up speaking with Sarbjot for an hour and a half about resilience, acceptance, social stigmas, and of course rare diseases. It was amazing talking to Sarbjot. Her positivity and passionate attitude is contagious. Hearing about her family’s story and how they have developed a larger purpose in life is inspiring. We hope that Sarbjot and Mehtab can create a community around them and raise awareness for rare diseases. We hope that having this conversation will help bring attention and help create talking points about such things as ableism, social stigmas, and what it means to be in a community.

Due to Covid-19 restrictions, we opted to do a video conference meeting. I recorded the interview as I knew we would talk about topics that would create a discussion. We hope you join in the discussion! Check out the full-length video on our Youtube channel below.