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Meet Georgia and Terry: A Family’s Altruistic Journey to Improve Lives Globally

12/4/2025

In the heart of East York, Greater Toronto Area, Georgia and Terry are proud parents to Zoe (14), Zach (12), and Michael (7). Their world shifted in April 2019 when their youngest child, Michael, was diagnosed at just 15 months old with Spastic paraplegia 50 (SPG50), an ultra-rare and devastating neurodegenerative disease that would rapidly deteriorate his physical and cognitive abilities.

Michael’s diagnosis came with heartbreaking words no parents should ever hear: no cure, no treatment, no hope. But Georgia and Terry refused to accept this. “We love our son more than life itself and will do whatever we can to change his fate,” they vowed.

From Personal Pain to Global Hope

Determined to rewrite Michael’s future, Georgia and Terry resigned from their full-time jobs and devoted their lives to finding a cure. Their days became filled with hospital visits, sudden emergencies, intense physiotherapy sessions, sleepless nights, and interrupted dinner and celebrations. They navigated a new world of science (networking and collaborating with worldwide community of researches, doctors, professors), advocacy (lobbying with government, raising awareness about SPG50) and fundraising (spearheading various fundraising events).

Zoe and Zach watched their younger brother’s battles unfold, often sacrificing time with their parents and forfeiting ordinary childhood moments. They showed great compassion, caring for Michael, celebrating his wins, and standing beside him in his struggles. In a family defined by challenge, empathy became their superpower.

Then the COVID-19 pandemic hit. Fundraising events vanished overnight. Critical therapies were halted. The world paused, but Georgia and Terry did not. They established CureSPG50, a registered Canadian charity dedicated to developing a gene therapy that didn’t exist when Michael was diagnosed. Their relentless efforts raised millions of dollars, connected them with global research teams, and caught the attention of regulators and governments.

In March 2023, against every conceivable odd, Michael received the first-ever SPG50 gene therapy trial at SickKids Hospital with the support of Health Canada. Although the treatment could not undo the years of damage already done, it slowed the disease’s progression. More importantly, it sparked hope for families around the world who once had none.

Cementing an Altruistic Legacy

What makes Georgia and Terry’s story extraordinary is their resilience and selflessness. Today, there are 130 children worldwide diagnosed with SPG50. Instead of working solely for Michael’s survival, they chose a mission that included all the other children.

Through CureSPG50, they have:

✅ Helped 11 (as at December 2025) children receive the gene therapy treatment;

✅ Secured pathways for 17 more children to be treated by the end of 2026; and

✅ Paved the road toward regulatory approvals with the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA). Once approved, the treatment will be made publicly available, permanently changing the narrative for SPG50 families so no parent will ever again hear the words “there is no hope.”

Their legacy is not simply scientific, it is humanitarian. They transformed personal heartbreak into global healing to improve lives. They built something their children will be proud of, and generations of families will be grateful for.

To learn more about their herculean journey or support their mission:

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