Spreading Hope at Westminster Abbey

The Speech: The Winds of Hope

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Imagine there was a virus capable of causing a sudden fever, intense weakness, muscle pain, headaches, the feeling of razors in your throat that progressed rapidly to vomiting, then diarrhea, skin rashes, and, in severe cases, internal and external bleeding. It sounds awful, doesn’t it? Well, that disease has a name; it’s called Ebola, and its monstrous effects are capable of turning vibrant, healthy communities into scenes of unimaginable suffering and despair.

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I was eight years old when I was traveling with my parents through West Africa and saw the effects of this virus first-hand. We were lucky and could leave, returning to our country in safety, but the thought of people dying from this horrific disease stayed with me. It felt like the monster stayed with me, making me scared and worried. I tried to overcome my fear, but nothing seemed to help. Then I realized it was the unknown that I was most worried about, so I started on a journey of learning. I learned how the disease was transmitted and how it interacted with our bodies, and it seemed the more I learned, the less anxious I felt — which made me then start to wonder: what if I could help defeat these diseases?

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So, when I was fourteen and the opportunity came to help a hospital research team develop drugs for rare metabolic disorders, I jumped at the chance! But I had no idea what to expect, and I remember one day, in particular. I was delivering a consent form to a patient, and as the glass door of the ward slid open, sat there on a bed was a little girl. Her name was Anna, and she was the same age as my younger brother; they were both eight, but what was different about Anna was that she was diagnosed with progeria, a rare disease characterized by accelerated aging.

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Staring at me with a focused gaze, she asked, “with the medication you developed, will I be able to go back to school?” Her soft voice but hard question made my heart fill with sorrow. In that moment, I realized the harsh reality of our divergent paths: mine as an aspiring scientist and hers as a patient. At eight, it felt like I discovered my life’s purpose, and now at the same age, Anna’s life depended on it. I was determined to help save her.

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As a sailor, I initially thought about holding rare disease-themed sailing races to raise funds and public awareness. So, I began a charity called ‘Sails of Hope’ and was surprised to discover many like-minded people who shared the same passion for change. It was empowering to unite friends, students, professors, doctors, pharma company leaders all towards the aim of tackling formidable diseases.

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As the summer approaches, Sails of Hope will be running further fundraising events for rare diseases with an awareness campaign and potentially a few sailing races at Canary Wharf. I know I don’t have all the answers, but people like Anna make me want to take this voyage further. The wind in our sails is a wind of hope. And my hope is that together, we can turn the tide against rare diseases so that one day no child, no person, will ever face their fight alone. So, if you are interested in learning more, please look out for notices and events coming soon…

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We welcome everyone to join our charity bazaar event at Westminster School in June and our charity sailing race at Canary Wharf in London. Additionally, last week we formed a new collaboration with Northwest University in Xi'an, China. We plan to hold a lecture on Mucopolysaccharidosis in Oxford in July, featuring many engaging charity activities like clay and sugar painting themed around MPS. We will post detailed event promotions on our official social media account soon, so please stay tuned and join us in Oxford in July!

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For more information, contact us at sailsofhope@outlook.com or +44 7536192771.

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