Narges’ Story
Narges’ Story
Narges Karbasi began her journey at Holland Bloorview two years after her family emigrated Canada from Iran. Her daughter, Lilly, was born two years later and diagnosed with 1p36 deletion syndrome, a rare chromosome disorder.
Once she connected with Holland Bloorview, Lilly had access to outpatient services such as speech language and physiotherapy in addition to seeing a pediatrician at the hospital. Lilly, now in Grade 6 and thriving, also attended one of the hospital’s nursery schools before attending the Bloorview School Authority in their IET program.
To give back, Narges has been volunteering as a family leader since 2017. Many of the activities she has been involved in include sharing her lived experience at new staff orientations, mentoring caregivers and parents and co-designing and facilitating educational sessions for families on various topics. In addition, she has completed her training to become a Family as Faculty to teach the next generation of health care providers what it’s like to deliver care that’s client- and family-centred. She has also completed her training to be come a family mentor, drawing on her lived experience as a caregiver to provide emotional support and a listening ear to other Holland Bloorview caregivers .
Holland Bloorview is now her ‘second home.’
Q & A
- What piqued your interest in volunteering as a family leader in 2017?I saw it a as a way for me to get connected to other parents, to learn about this journey while I’m doing something positive. I remember how frustrated and how difficult it was for me in the first years of [my child’s] diagnosis. Sharing my experience with them [caregivers] is so rewarding since they know they’re not alone on this road.
- What was one of your favourite memories as a family leader volunteer?The first time I presented was to the hospital foundation team. It was lovely to share the story of my family’s life to move people to help Holland Bloorview. It was the first time I presented my family to a room full of people and it’s a memory I’ll always cherish.
- What impact do you hope to make?
I want to show other parents that it’s not the end of the world because I’ve been there myself. I thought to myself [at that time] it’s done, everything is done. But now, I see myself where I stand today. I want to say to other parents you can get back on your feet; you can be there to help other parents; you can be happy and have a life. You can do something positive in this journey.
- What advice would you give to a caregiver or parent who is interested in volunteering as a family leader?As a family mentor, I tell families to first become a family leader. When you can connect to other families like yourself and your kid, you will learn more and you will find new friends. It’ll be something that’ll help you to get back on your feet.