News about mass shootings in the United States resonate with me the most. I find it almost ironic that friends and family were worried about me going to certain places in my summer experience, and yet the United States has a mass shooting issue like no other place in the world. I personally felt safer in places in Morocco, Italy, and Switzerland versus certain areas in the US. I remember while I was in Italy my group and I went to an American restaurant for the fourth of July and almost all at once we received the news of the mass shooting in Illinois. Some part of me was not even surprised—devastated for the individuals who lost their lives and families who will never be the same, but not surprised.
Miracle Story in Pavia
During my time in Italy I went to a Neuroscience Research Institution called Mondino where I spent most of my time in the Pediatric Department, specifically the unit that specializes in Neuromuscular Disorders of Children and Adolescents. It was there that I learned about a rare neuromuscular disorder called Spinal Muscular Atrophy (SMA) and an inspiring little girl.
This little girl received the first drug treatment for what was before an untreatable disorder which guaranteed a life without the ability to walk, quick deterioration in muscle tone, and a very short lifespan. Born in 2016, diagnosed and treated with the first dose of Spinraza (the drug treatment) in 2017, she was the first patient in Italy to receive this treatment for SMA. Immediately the drug changed the course of the disorder: physiotherapists started to work with SMA patients for improvement and growth, not just conservation and limited loss of function. I watched her physiotherapy evaluation video in 2019 where she walked with a walker and orthopedic equipment on her legs and waist. Then in 2021 I watched her walk with her walker and no orthopedic equipment around her waist—she wiggled, but she was walking. Now, she walks without compensating as she built up the core strength to do a task we all take for granted. She may never be able to walk without a walker, play sports with her friends, or see the world as I dream to do, but she is a miracle. She is hope for further miracles. She is an inspiration.
So why isn’t her story heard? Because she is a miracle, a rarity, and people fail to hold on and remember the miracles. Why? Because miracles are only a glimpse of hope and joy in life while the rest is often filled with judgement, worry, polarizing politics, and eventually a perspective shaped to believe there is more bad than good in this world. More danger than beauty. No trust to be had. And therefore no trust in the miracles life can bring and does bring.
My summer experience and the many communities I have interacted with have all been connected to movement: from teaching yoga to the kids in Morocco, to taking local dance classes, and then shadowing residents in the Pediatric Neuromuscular Disorders Unit in Italy. Throughout these experiences I noticed how movement is truly a universal language as I used kinesthetic learning techniques to overcome language barriers with the kids while also sharing joy with many locals through dance. Then in Pavia I learned about individuals with rare neuromuscular disorders who may never have the chance to hike, dance, or let alone walk without a walker in their lifetime. I suddenly realized how lucky I am to be able to carry out my passions to hike, dance, and travel. It was with this experience that I became interested in the connection between movement and overall health–and then with my interest in the brain I narrowed my capstone topic to focus on movement and brain health which includes cognitive, emotional, and motion function. I have two interviews from specialists in neuromuscular disorders and my observations and experiences from working with the children in Morocco.
One thought on “Miracle Stories”
Your capstone project sounds fascinating. I love how you connected both of your experiences to create a comprehensive capstone project. The concept of movement being a connecting force between your two experiences is so interesting, and I am sure it will result in a great capstone project.