'Faith and love can do more than any medicine'
By Louise Kinross
BLOOM recently heard from Yasna Besedina (photos above), a longtime Holland Bloorview client. She told us a bit about herself and then we asked some questions.
“I am an active 18-year-old woman who lives in Toronto with my mom, dad, brother and grandma. I can fluently speak Russian, Ukrainian and English. My favourite school subject is history as I always love learning about battles that changed our world, and especially the military techniques that were used. In my free time I enjoy reading, dancing, swimming, writing poetry and discussing politics. I love exploring my wonderful city through the TTC metro system, my favourite place being the Royal Ontario Museum (ROM) in downtown Toronto. In terms of doing sports, I enjoy running outside and on the track, and doing fitness. I have some friends, but not many, honestly (more on that later). Overall, I am a regular person like anyone else despite my disabilities.
BLOOM: What was it like to grow up with your disabilities?
Yasna Besedina: I was born premature at six months, and because of that, I developed several conditions that have affected me since birth. One of the main ones is an eye disease called Retinopathy of Prematurity, which happens when a baby is born too early, they are put into an oxygen incubator, and blood vessels in the eyes don’t develop normally.
In my case, the abnormal blood vessels caused my retinas to detach, leading to complete blindness in my left eye and limited vision in my right. My right eye is severely nearsighted, and I have tunnel vision and floaters, so I can only see clearly up close and straight ahead.
Along with my vision problems, being premature also affected my hearing, and I have mild hearing loss in both ears. I use hearing aids and an FM system at school to help me understand speech better, especially when teachers talk at a distance.
In addition, I have mild cerebral palsy, which also developed because I was born too early. That causes stiffness in my muscles, my feet to turn inward, and I trip frequently. I wear heavy plastic leg braces to help me walk properly. When I was little I was diagnosed with Asperger's with ADHD and I did intensive behavioural intervention.
My challenges were more social and friendship related. I had trouble socializing and making friends is hard as people think I am weird. Growing up, I often felt left out or different from other kids because of my disabilities. Some people didn’t know how to talk to me or assumed I couldn’t do the same things they could.
Others would stare or make comments about my braces or hearing aids, which made me feel self conscious. Making friends was sometimes difficult because I had to find people who truly accepted me for who I am, not just what they saw on the outside. I noticed that kids with disabilities, including me, usually feel left out not because they don’t want friends, but because other kids don’t know how to include them.
When I felt lonely or excluded, I tried to focus on things that made me happy like reading, learning about history, or spending time with my mom and family.
Reminding myself that things can get better really helped me keep going. I also focused on the genuine friends that I do have. Even if it's just one or two people, that's enough if they're real. Everyone deserves friends who appreciate them for who they are.
BLOOM: What kind of care did you value?
Yasna Besedina: I came a long way from being constantly in the hospital and years and years of therapies. There were many surprises along the way. My mother tried every type of help she could find to support my physical and mental development. Some therapies did a lot of things, some less, but every single one of them taught me something.
My favorite was Tomatis music therapy, because it made me happy and relaxed and helped my hearing and concentration.
I was on oxygen 24/7 until I was almost three years old, which slowed me down physically. Psychomotor re-education helped me learn to crawl, stand and eventually walk when I was three-and-a-half years old. Feldenkrais therapy was great because it loosened up my body and taught me how to move with greater awareness. It helped my body feel more flexible.
I also worked with a sensory therapist because when I was little, I couldn’t eat regular food. Everything felt too strange or uncomfortable. By age four, thanks to her, I finally started eating normal meals.
My behavioral therapist spent over 15 years with me. She was patient and kind, even when I was wild, moody, or refused to cooperate. Because I was a kid, I didn't want to sit still or repeat exercises again and again. I got tired and frustrated.
Still, my mom never gave up. She tried everything from the traditional to the not traditional therapies, because we never knew which would prove to be the breakthrough. Honestly, without all of that, I may not have become the person I am today.
At the time of my birth, doctors informed my family that I would never walk or be able to communicate because of my multiple disabilities. And here I stand today—walking, talking, learning, writing and living life.
The kind of care that worked best for me was open-minded, patient and creative. It was care focused on possibilities, not limitations. What didn't work were moments when professionals saw only a diagnosis, not a person.
BLOOM: Was there a therapist or doctor at Holland Bloorview who had a positive impact on you?
Yasna Besedina: Yes, Dr. Kawamura was kind, helpful and always supported us with extra information and organizing appointments. She worked with me for 17 years. I loved coming to see her because she always made me feel like anything is possible if I really want it.
I also really liked my physiotherapist Jackie Cotton. She encouraged me to join adaptive sports. She was wonderful and helped me with many things related to physical activity. I still do running, walking and yoga stretches every day. I also go to the gym once a week and I have a fitness class at Holland Bloorview every week.
BLOOM: What advice would you offer parents about how to best support their disabled child?
Yasna Besedina: The years of trial and error, patience and therapy taught me one gigantic lesson: faith and love can do more than any medicine. My mom taught me what true support looks like.
My suggestion to parents is never to give up and always trust your child's capability, even when it seems impossible. Any small step in the right direction counts. Experiment with things, keep your mind open to new solutions, and rejoice in each little step forward. Above all, provide your child with time, love and support. When parents show that kind of care, it makes the child feel confident enough to venture out, discover the world and do amazing things themselves.
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