Courage. Compassion. Family. Faith. Speak with anyone who knew Alecia Maringola and you’ll hear those words repeatedly, and for good reason.
Alecia was diagnosed with the rare disease spinal muscular atrophy (SMA) at 13 months of age. She was not expected to live past 3 years old. But Alecia, fueled by a deeply loving and supportive family and her unrelenting faith in God, did more than defy the odds—she shredded them.
As Alecia grew older, her resolve strengthened. Severely disabled, Alecia went on to graduate from high school and, studying remotely, earned a bachelor’s degree in crisis counseling from Liberty University based in Lynchburg, Virginia. And along the way, and in every challenge she faced, her spirit—her “golden heart,” as her mother said—would prevail. Over and over.
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On December 1, 2022, with her family by her side, Alecia peacefully passed away. She was 36 years old. In the last year of her life, Alecia was a valued, widely admired columnist for Rare Disease Advisor.
Writing from her lifelong home in Southington, Connecticut, week after week Alecia would explore her life living with a disease that progressively weakens voluntary muscles. As the months rolled on, her voice became more focused, powerful, and relevant. She would speak about deeply personal issues with such empathy and detail that SMA patients, family members, healthcare providers, researchers, and others would gain insights unavailable from any other source.
Alecia was also a determined, fearless advocate for other SMA and rare disease patients who, while managing their daily care, faced the rigors of insurance company bureaucracies that increasingly challenge costly treatments or medications; state laws that exert tight controls over state benefits that patients rely on; and the constant difficulties the rare disease community has finding doctors who are knowledgeable about their disease let alone able to provide treatment.
But ultimately it was Alecia’s honesty and compassion that so defined her work.
“Alecia always spoke from the heart,” her mother, Laura, said. “She was fearless. She embraced life. Alecia was determined to live life to the fullest despite the obstacles—and she did.”
Read Alecia’s SMA columns
In her last column, published at the start of the holiday season, she articulated the many reasons why she was grateful, and then came the lesson for all of us:
“The vulnerability of our minds is very delicate in the way that it’s easier to perceive the things we don’t have rather than what we do have. We use the strategy of comparing our lives to others to try to justify what we think we deserve. Not that it’s a bad thing to desire good things. However, in my situation, I’ve learned to value and appreciate the things I do have at the moment, and throughout different stages of my life, because with the nature of SMA, it’s uncertain when the good things might evaporate.”
Alecia’s artistic, creative instincts crossed many genres. One is painting. Her father, William, explains:
“When Alecia painted, she used watercolors and never sketched out her idea. She just painted, direct from her heart to the canvas.”
Indeed, her paintings reflected not only advanced, natural skill but always a message about what really matters in life—faith, family, and living in the moment.
When Alecia turned 36 last May, she wrote a compelling, boldly personal column about how SMA robbed her of having and raising a child. In Alecia’s own words:
“As a woman with SMA, the part I struggle with is accepting I have been cheated of the opportunity to carry a life inside me. There is no more unique bond than a mother and her child. They’re so deeply connected. And with each stage of pregnancy, there are milestones. I’ve always imagined hearing the first heartbeat and feeling the first kick in my belly. It truly is a miracle and a beautiful gift that oftentimes gets taken for granted.”
As Alecia penned those words, she also crafted a painting that reflected the depth of her sadness over her inability to bear children. In it, she painted a sleeping wolf in a fetal position, protected by flowers and vines.
“She was expressing the sense of loss over something she wanted so desperately and could not have,” her father said. “Alecia was also making a statement of the sanctity of life.”
Alecia wrote in another recent column about what motivated her:
“Living with spinal muscular dystrophy (SMA) is wrought with constant emotional ups and downs. I can’t count how many times my nieces and nephews saved me from falling into a deep depression. Their little hugs, and sweet ‘I love you’s’ can warm your heart in an instant. They somehow magically make me forget about being in a wheelchair while I’m around them. The effort they make to include me in all their activities is the most selfless act of kindness I’ve ever experienced. Their love pushes me to keep pressing myself to become the healthiest and best aunt I can become.”
News of Alecia’s passing spread sadness and reflection among her friends and colleagues at Rare Disease Advisor and its parent company, Haymarket Media. Speaking to his team, Rare Disease Advisor Brand Director Michael Nace said:
“Alecia was a fantastic columnist and a great person. She was gifted with many talents, including her writing and art, and she had an amazing spirit. There’s no doubt that her column on RDA made a substantial impact on the SMA community.”
In discussing Alecia’s life, the work she did to raise awareness about SMA, and her valued insights to help other patients live life to the fullest, her mother, said:
“It’s her golden heart that lifted us all.”
Alecia’s parents asked that any donations be made in her name to the Make-A-Wish Foundation.
“Many years ago, the Make-A-Wish Foundation gave our family a fully paid-for trip, first class all the way, to Disney World. To this day those memories are still with us. The experience lifted her spirit.”
Haymarket has made a $1,000 donation to the foundation in her name. Those who may want to make a donation in the name of Alecia Maringola can do so here: Make-A-Wish Foundation.
