In recent years, concerns about lung function led Caruso to make “her thoughtful and courageous decision” to seek a second lung transplant, her obituary states.
Amanda Caruso, who inspired countless people across social media recounting her experiences as a lung transplant recipient, died this month. She was 28.
A lung disease diagnosed in Caruso’s infancy led her to receive a double lung transplant when she was 17 months old. Late this summer, she underwent a second transplant in Philadelphia that did not achieve the hoped-for results. She died Sept. 9.
“When her health again became difficult, she never allowed this to stop her from living and pursuing her dreams,” states Caruso’s obituary. Indeed, her “beautiful, full life,” as her obituary describes it, was chock full of accomplishment and impact.
Amanda Caruso TikTok follower: ‘She had a beautiful soul’
Throughout her time on Earth, Caruso shared her health journey to over 200,000 followers on TikTok. There, she was able to influence the lives of many of her followers worldwide.
Some of her TikTok followers shared their condolences on her obituary website and online.
“I have followed Amanda’s journey for many years on TikTok and I am a follower from London, England. I say a prayer for you all tonight,” Darcy Fletcher wrote.
“I’m a TikTok follower of Amanda’s and she always brightened my day. She had a beautiful soul and her energy was contagious,” Kalynne Simpson wrote. “I cannot stop thinking about her and her family. My heart is absolutely broken. Many condolences and prayers for everyone who knew her! She is very deeply missed.”
“Sweet Amanda, you were and always will be such an inspiration to me. Thank you for sharing your life and journey with lung transplant with us all, as well as empowering those struggling with lung disease, and advocating for organ donation,” Rebecca Newman wrote. “As a transplant mama of my daughter Harper who recently lost her battle after transplant, my heart goes out to you, your family and all of your supporters. You made a difference in the world with your positive light.”
Caruso’s gift of inspiring and connecting with others via social media is noted in her obituary.
“Amanda impacted thousands, if not millions, through her bubbly personality on social media,” the obituary reads. “She found joy in creating content since she was 11 years old.”
2014 Webster Thomas graduate worked many jobs
As she surpassed her estimated life expectancy, Caruso graduated from Webster Thomas High School in 2014. She earned her esthetician license at Continental School of Beauty and completed her associate’s degree in health information technology at Monroe Community College.
More recently, Caruso earned certification as an oncology data specialist.
Caruso also worked many jobs including at Bill Gray’s Restaurant — her first employer as a teenager. She worked as an esthetician at Hand & Stone spa; as a surgical coordinator at Unity Hospital; and in data entry for the Cancer Tumor Registry at Rochester Regional Health.
Caruso also “poured her heart” into her own handmade jewelry business — Tiny Woman Creations, her obituary notes.
Amanda Caruso’s ‘courageous decision’
In recent years, concerns about lung function led Caruso to make “her thoughtful and courageous decision” to seek a second lung transplant, her obituary states.
She described her challenges and options during an in-depth interview during 2023 with WROC-TV journalist Gio Battaglia. She described how her parents had learned during her childhood double lung transplant that only 50 percent of recipients make it past six years.
“Here I am now, 25 years later,” Caruso told Battaglia in that 2023 interview. “It’s an amazing feat. So, the fact that I have more than doubled or quadrupled that is incredible.”
That led to transplant surgery in Philadelphia just over one year later. Caruso’s social media audience prayed and rooted at each step of her journey.
According to her obituary, she earned placement on the organ donation recipient list in August 2024.’
“Amanda shared stories about her life, including her health journey as she awaited a second lung transplant, right up until she entered the operating room on September 8th to receive the immeasurable gift of donor lungs for a second time,” her obituary states.
Unfortunately, the medical effort did not achieve its hoped-for result, and now her family and friends and her followers on social media are mourning this remarkable young woman.
According to her obituary, Caruso is survived by her parents, Janice Roback Caruso and Steven Caruso; siblings Karli, Leeanna and Trevor Caruso; and her “fiancé and true love,” Matthew Henning.
Her obituary reads, “Amanda was an incredible person… a true source of joy, love, positivity and strength.”
In her honor, her family has asked that people make donations to Donate Life America, whose mailing address is Donate Life America, 5516 Falmouth St., Suite 302, Richmond, VA, 23230
The family also asks people to consider registering as organ donors, which can be done at https://donatelife.ny.gov/register/
— As a Rochester native, Justice Marbury entered the world of journalism to create work where voices like hers were heard—the voices of minority communities. Marbury covers small businesses, neighborhood concerns, and the interesting people who live in Rochester neighborhoods. As the 19th Ward reporter, she has helped implement community outreach ideas by asking what people in various communities want to read about themselves in addition to regular news. Contact her on Instagram @justice_marbury and by email at [email protected].
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