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what it feels like

what it feels like: travelling the world with spinal muscular atrophy

living with spinal muscular atrophy, tori hunter points to cities around the world that show us true accessibility is possible.

by emma jones

apr 10 2023

7 minute read

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spinal muscular atrophy: what does it feel like?

tori hunter, an advocate for those living with spinal muscular atrophy, spends her time as a social media campaign manager, freelance writer, accessibility consultant and pet-parent to her poodle, maya. supplied

one of tori hunter’s favourite pastimes is travelling. she says hawaii and london, england have been two of her favourite locales to visit, and has also taken some breathtaking shots in squamish, british columbia and banff, alberta . while tori travels, she also takes careful notes and blogs about each place she visits — living with spinal muscular atrophy, tori works to show others how accessible travel is possible.

spinal muscular atrophy (sma) is a hereditary disease usually diagnosed in the first months to years of a child’s life. in most cases of sma, the survival motor neuron gene 1 is missing or mutated in the patient’s dna, leading to loss of motor neurons. this results in atrophy, or “wasting away”, of the body’s skeletal muscles — especially those in the chest, upper legs and arms.

the condition is rare , affecting one in 6,000 to 10,000 live births. there is no cure for sma, but treatments can stop the progression of weakening muscles.

tori sat down with healthing to talk about why her childhood wasn’t all that different from her friends’ and how other cities show us that universal design is achievable.

what led to your spinal muscular atrophy diagnosis?

i was diagnosed when i was 12 months old. my parents noticed that i wasn’t reaching any of the typical milestones that my older two sisters had reached when they were babies. i never tried to roll over, when my parents would hold me on their lap i would never move my legs, i would never hold my bottle on my own. overall, i just had a lot less movement than my older two sisters did.

my mom brought me to our family doctor a few times, but it wasn’t until i was a couple months old that they realized that i didn’t have a [ knee-jerk] reflex. he referred us to sickkids hospital, and there, they knew what it was right away.

how is sma diagnosed?

i believe nowadays it’s done via blood work, but i think at the time it might have been a muscle biopsy — i don’t remember exactly what that process was like.

what are the treatments for sma?

growing up, there were no treatments for sma. my parents ran a charity called fight sma for about 20 years, and the goal was to raise money for research to help find a treatment or cure for sma.

in 2016, the first treatment became fda approved in the states, which is called spinraza. since then, there have been two other treatments that have come out and more are on the horizon. none are cures, but a lot of them are able to significantly help the rate at which the disease progresses. they’re especially beneficial for children who are able to get it when they are young because the older you are when you take it, it becomes harder to reverse that muscle damage. these treatments are really promising.

growing up, tori and her parents ran fight sma, a charity to raise money for sma research. supplied

what was it like growing up with sma?

in some ways it was really different from most people’s childhood, but in other ways it was so normal and typically to any other kid. i grew up with a very loving and supportive family — i have two older sisters and my parents who are just amazing. they never really let my disability hinder anything that i wanted to do — i went to a regular school, we would travel all the time and they always had me in extracurricular activities. of course, it looked a little bit different. i had a lot of doctors’ appointments. i grew up in a wheelchair. (i got my first motorized wheelchair at the age of two.)

elementary school, especially, was quite good. i had an amazing ea that was with me from the time i was in grade one all the way up until grade eight. she was really like a mother figure to me. she helped me navigate those elementary school years and i grew up with very close friends. my school at the time was super inclusive and i never felt that my disability hindered me too much.

high school was a little bit of a different ball game. i was going from a small school of kids that had grown up with me and accepted me, and then i went to a school with more than 3,000 students. all of a sudden, i didn’t know anyone and i didn’t have the help that i was used to. it was hard not to feel embarrassed of my disability. once you get to that age, [you notice] all the stuff you are missing out on because of your disability, which wasn’t necessarily the case when you’re a younger kid. honestly, in my time with my disability, i’d say those years were the hardest for me to navigate.

how did you cope with all of that?

my family played a really big role. i’ve always been super close with my older sisters, so they were really big role models for me, and they were able to help me navigate through that. my family helped me realize that high school is not everything and it might be four kind of crappy years of my life, but once i’m done, i’m done, and i never have to go back. i just [kept] my mind on that and focus[ed] on my studies and, after that, i moved out and went off to university and those were definitely much better times.

and afterward, you went to university.

i went to ryerson university [now toronto metropolitan university], and i did my bachelor of arts in creative industries which is an interdisciplinary program that focuses on the business side of the arts. i was able to live in residence for my first two years, and then i moved out and i’ve been living in an apartment downtown since then.

what do you do for work?

i do a lot of creative freelance writing — i have my own blog and then i also write blog posts for other companies. i also do accessibility consulting, so i’ve worked with some community arts festivals in toronto to help them make festivals and events more accessible to patrons and artists with disabilities. i love doing that because it [combines] my education in the arts with my passion for making things more accessible. i’m also the host of biogen’s social media campaign, smashing barriers. i love trying my hand at different things, especially within the creative industries.

for me, freelance works really well because, with my diagnosis, my fatigue levels can be very unpredictable. some days i’m able to put in a full eight-hour workday and then other days it might be closer to one or two. so to me, being able to manage my schedule and be encouraged by my own projects works a lot better. i don’t think my body would be too happy if i put it through a typical nine-to-five schedule.

what do you do in your life that brings you joy?

i really love travelling, which i write about on my personal blog. i also love trying new restaurants and exploring the city.

i have a small toy poodle, maya, and i love taking her for walks, and getting out and exploring with her. i live with my best friend, so we often just hang out together and watch movies. day-to-day i live a pretty typical toronto life.

do you have a favourite place that you have travelled to?

my favourite place is a tie between hawaii and london, england. london is such a beautiful city, and there has been a lot done a lot in terms of accessibility that you don’t really see in canada or the u.s. for one, all their buses and taxis are accessible — which is amazing, because here in canada it is so hard to get accessible transportation. even though toronto is probably one of the more accessible places [in canada], even that is a challenge.

many subway stations don’t have elevators, and even the subway stations that technically are accessible are not really because the gaps in between the platform and the subway is huge. i’ve gotten stuck in there before because my front wheels fall into the gap. it’s very dangerous.

it’s frustrating when you’re not able to get around or do the things that you want to just because the infrastructure is not set up. wheelchair transit is an option, but you have to pre-book, and the scheduling is not convenient. for example, [thursday] i’m going to the hospital, and i have to be there for 11 a.m. i booked my wheelchair ride on monday, but i am being picked up at 7 a.m. for my 11 a.m. appointment.

i have travelled to other places in canada, like banff, and they have only one accessible taxi in the whole city. you also have to pre-book it, and you can only travel between 9 a.m. and 5 p.m. because that’s when the driver is working. it’s very restricted and it doesn’t give people with disabilities a lot of options for getting around.

it’s important to be able to get around the way you want to — that makes everything so much easier and stress-free.

readers interested in tori’s story can read more on her blog, and can learn more about spinal muscular atrophy at muscular dystrophy canada and cure sma.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn .

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what it feels like: travelling the world with spinal muscular atrophy

living with spinal muscular atrophy, tori hunter points to cities around the world that show us true accessibility is possible.

what led to your spinal muscular atrophy diagnosis?

new pilot project screens for spinal muscular atrophy in alta. newborns