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When Terry Pirovolakis and his wife, Georgia, welcomed their third child, Michael, in December 2017, it seemed like a joyous, healthy birth. However, within six months, they noticed something concerning—Michael wasn’t lifting his head like other babies his age. Fox News reports that after a series of tests, their lives changed forever with the devastating diagnosis: Michael had SPG50, a rare neurodegenerative disease. This genetic disorder, which affects fewer than 100 people worldwide, gradually leads to paralysis and cognitive decline, and there was no available treatment or cure.
For most parents, such a diagnosis is heart-wrenching, and the lack of available treatment leaves them feeling powerless. However, Terry Pirovolakis, an IT director from Toronto, Ontario, refused to accept that there was no hope for his son. In an extraordinary display of love and determination, Terry set out on a seemingly impossible mission—to develop a cure for his son himself.
Groundbreaking gene therapy
According to the Daily Mail, SPG50 is a rare form of hereditary spastic paraplegia that progressively weakens muscles and affects mobility. For Michael, the disease meant facing a future of paralysis and severe mental disabilities. Determined to give Michael a chance at life, Terry dedicated himself to finding a solution. He launched a global search for researchers, geneticists, and doctors who could help him create a gene therapy to target the underlying cause of the disease.
"He just didn’t seem like he was meeting his milestones, They told us to just go home and love him — and said he would be paralyzed from the waist down by age 10, and quadriplegic by age 20, They said he’d never walk or talk, and would need support for the rest of his life," Pirovolakis told Fox News.
Terry’s journey was not easy. Developing a treatment for such a rare condition is an extremely costly and complex endeavor. However, driven by the thought of saving his son, Terry turned to crowdfunding, raising millions of dollars to fund the research. He connected with medical experts and biotechnology firms, tirelessly working to create a custom gene therapy specifically for Michael. His relentless efforts paid off. In 2021, the family received approval from the U.S. Food and Drug Administration (FDA) to administer the experimental treatment to Michael.
"Children with SPG50 may experience early developmental delays, muscle weakness and spasticity, but they continue to strive and adapt. Over time, these symptoms can worsen, making it hard for affected individuals to walk and perform daily activities. The prognosis varies from person to person, but it’s generally a progressive condition, meaning symptoms can become more severe over time," Dr. Eve Elizabeth Penney, an epidemiologist at the Texas Department of State Health Services and medical contributor for Drugwatch, told Fox News.
Potential lifeline for others
The groundbreaking therapy, which delivers a healthy version of the gene missing in children with SPG50, is designed to halt the progression of the disease. Though it is still too early to know the full impact, initial results have given the Pirovolakis family hope. The therapy not only offers a lifeline for Michael but also for other families whose children suffer from SPG50. Terry’s mission to save his son has expanded to a broader goal: helping other children with the same condition. His efforts are now paving the way for further research into rare diseases.
Terry’s story has touched the lives of many, showing the power of a father’s love and determination. What started as a desperate attempt to save his own child has blossomed into a global effort that could save many more lives. Terry’s message to other parents facing similar challenges is simple yet profound: "Don’t ever give up. There is always hope, and if there isn’t a cure, maybe you can create one."
Through his unwavering dedication, Terry Pirovolakis has transformed an impossible situation into a beacon of hope for families affected by SPG50 and other rare diseases.
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