Honoring Serena Lawrence: How Her Life Changed Mine

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by Leah Leilani |

farewell, support system, tiredness, single, ableism, angels, independence, crip camp, redefining success, introversion

In the summer of 2017, I received an email from a woman named Serena Lawrence. She had discovered me on Instagram, and had learned about my past ambassadorship with the Muscular Dystrophy Association and my blog “Millennial On Wheels.” 

She told me about a job opening as a columnist for a rare disease website at a company called BioNews Services. The site included professionally written research updates and columns written by patients, which was what I would do if I accepted the position. There’s no need to guess that I said yes.

My transition from blogger to columnist wasn’t particularly smooth. I struggled to acclimate to the responsibilities of my job, such as communicating when I needed to take a week off from writing due to my health. Although my skills as an employee were lackluster, Serena never failed to be understanding and helpful. Her gentle reminders to check in with her whenever I needed to reassured me that I was indeed in the right place. 

One September morning last year, I found a sea of mournful comments on Slack, the application my company uses to communicate virtually. An unexpected loss shook us all like an earthquake. Serena had passed away. 

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Unfortunately, I only truly began to realize what a gift Serena had been to this world and to those around her after her passing. Little did I know that Serena had also battled heath problems. 

She had a disease called pulmonary hypertension (PH). Prior to becoming the senior managing columns editor for BioNews Services, she created a blog that she so cleverly named “The PHight or Flight Project.” She shared her story of living with PH to offer support and a sense of community to others with the same disease. 

During her time here, she helped BioNews Services blossom into what it is today. She hired many employees with rare diseases to help spread awareness via the company’s network of websites. I never imagined I’d have a paying job, let alone one that gave me a voice to share what my life is like with mitochondrial myopathy. 

Although I didn’t know Serena on a personal level, I am eternally grateful for her role in my life. She gave me — and many other BioNews Services columnists — a reason to carry on and a way to contribute to the world. Her time in the physical world was cut short, but what she did with the time she was given was profound. 

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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