My Sister Alyssa

Last month, one of our beloved Ambassadors, Alyssa LaRosa, passed away. She was stylish, thoughtful and had a social media presence that was unparalleled. Every chance she could, she was promoting the mission of organ donation and encouraging/educating others to become registered donors. She was a registered donor, then became a tissue and cornea donor at her passing. She thought of it as a way to pay it forward.

Alyssa’s brother, Tré, wanted to share his thoughts on his sister and organ donation for Donate Life Month.

April is National Organ Donation Month, a trend started by Donate Life America and its partners in 2003. The goal of the month is to encourage Americans to become organ donors and to spread awareness about organ donation and, in their own words, “celebrate those that have saved lives through the gift of donation.” I’ve become passionate about organ donation because of my sister’s story. My sister Alyssa was an ambassador for Donate Life and the Cystic Fibrosis Foundation and helped to raise thousands of dollars through fundraising and online advocacy.

My sister Alyssa and I both have cystic fibrosis. If you’re unfamiliar, cystic fibrosis is a genetic disease that causes excessively thick mucus that affects many organs, but most significantly, destroys the lungs through severe infection and inflammation. Due to this damage, progressive lung disease means that a lot of people with CF may eventually need double lung transplants. But I’d be remiss if I didn’t mention that due to the thick mucus, inflammation, and immense amounts of antibiotics and other drugs throughout our lifetimes, many CF patients can also need pancreatic, liver, kidney, and even heart transplants. Life with CF means we’re at risk of most of our major organs failing us.

In 2013, my sister’s lungs were failing: severe infection was ravaging her lungs, scar tissue and inflammation hampering her ability to breathe and metabolize oxygen. In May of 2013, she was listed for a double lung transplant. She received the call just five days later and received her first set of lungs on May 21, 2013. My sister’s story is an unfortunate one, but not actually that unusual. Her first set of lungs went into chronic rejection just short of 3 years later, leading her to need another transplant by June of 2016. The heartbreaking reality is that Alyssa’s second set of lungs went into chronic rejection just over a year later, in July 2016. She recently passed on March 12, 2018 not even a full five years after her first transplant.

And while this may not seem like the uplifting testament for organ donation at the superficial perspective, I’m here to say it in fact is. I was 18 when Alyssa’s lungs were failing in 2013. I was a college freshman, naïve to the complexities of life, even after dealing with a chronic disease for 18 years. I was close with my sister, but she was still just my “big sister,” hardly somebody I realized was a role model, best friend, and confidant. At the time, Alyssa was a young 24 years old. (It’s humbling to realize I turn 24 next week.) Alyssa had already influenced a lot of lives, but she wanted to continue fighting.

Organ donation provided my sister that opportunity. Two double lung transplants gave my sister nearly five years. In those five years, she touched thousands of lives through spreading awareness about cystic fibrosis and organ donation. She inspired people to continue fighting through end-stage organ disease. She loved fashion and through inspiring pictures, motivated people to live their lives to the fullest no matter the adversity. She successfully encouraged the community around her and online to become organ donors so that they, too, could someday save potentially multiple lives.

While they felt too short and went by too quickly, the last five years have been the most meaningful to me. My sister and I developed a bond that I am incapable to form with anybody else. She became my best friend and biggest advocate, just as I became hers. She wholeheartedly supported my endeavors in science and writing and I fully supported her advocacy efforts. But all of that aside, her organ donors gave me five more precious years with my sister. Because of her transplants, she was able to see me graduate college, become a published scientist, increase my writing platform, and so much more. I’m eternally grateful for her donors for being selfless in life so that they allowed me five more years with my sister that I will forever cherish.

In a way, Alyssa’s story comes full circle. She was able to be a donor herself. Organ donation was one of Alyssa’s biggest passions and she hoped she could demonstrate how important organ donation was. She did exactly that, and we’re so happy, as she would’ve been, that in the end, she was able to be a donor herself.

Donate Life is influential in encouraging people to become organ donors and celebrating the lives of those that both been saved and those that have saved others through organ donation. My family and I encourage others to be organ donors so they too can help others that so desperately need it.  Organ donation is a selfless act steeped in compassion. Please consider becoming an organ donor today if you aren’t already one.

Tré is an up and coming writer in the Cincinnati and Lexington areas. To keep up with him, visit his blog!