- N
Hi,
A heartfelt Thank you for reading our story
We are a family from Surrey.
About Gurmoh
Gurmoh is a joyful 3-year-old who attends preschool, loves making friends, and connects easily with both children and adults. His favorite song is Wheels on the Bus, and he happily dances to Baby Shark. He dreams of becoming a firefighter and spends his days driving his toy fire truck around the house, proudly wearing his hat.
⸻
Medical Condition
Gurmoh has a gait abnormality and struggles with balance on uneven surfaces. He has been diagnosed with a rare, progressive neurodegenerative disease—Spastic Paraplegia (SPAST c.1496 G>A), caused by a de novo mutation (neither parent carries it).
This condition progressively damages the nerves responsible for movement and cognition. It leads to painful muscle stiffness and, over time, paralysis of the legs and trunk.
⸻
What This Means for His Future
Without timely gene therapy, Gurmoh is expected to lose his ability to walk, eat, speak, and eventually his independence. He may also experience severe pain and cognitive decline.
Today, he remains independent, with challenges mainly on stairs and uneven ground.
⸻
Why There Is No Treatment Yet
There is currently no approved therapy. Due to the rarity of his condition—he is the only known case in Canada—treatment must be individually developed for his specific mutation within the SPG4 category.
⸻
A Real Path Forward
Gene therapy has already been successfully developed for similar conditions, such as SPG50, demonstrating that treatment is possible.
McGill University has committed in writing to develop a personalized gene therapy for Gurmoh, led by Dr. Ziv Gan-Or, Director of Clinical Research at The Neuro. This gives him a critical window of hope before further progression.
Each and every dollar will go into developing this gene therapy.
⸻
Financial Challenge and why we need help
The estimated cost to develop and deliver this therapy is $6–8 million, covering research, pre-clinical, and clinical phases. Early stages depend heavily on patient and philanthropic funding, while later stages may receive government support.
We cannot do this alone. We are giving everything we can to this but it’s not possible without your support. Each and every dollar and share makes a huge difference for us
Gurmoh’s ongoing care costs us approximately $6,000–$8,000 per month, including therapies, specialized equipment, and frequent travel for intensive treatment. After this one time gene therapy treatment he will be cured of this disease and could lead a normal life.
⸻
Time is critical
Gurmoh needs $2.7 million to initiate and accelerate the development of his gene therapy. The science, expertise, and infrastructure are already in place at McGill—funding will determine how quickly treatment can reach him. Every second his nerves are dying because of this disease and they cannot be recovered back. He needs the treatment as soon as possible. If the funding doesn’t come in time it will not be possible to save him from this disease
⸻
Message from our family
Like any child, Gurmoh deserves a happy, pain-free, and independent life. He is not asking for anything extraordinary—just the chance to live like every other child.
With your help, his story doesn’t have to be one of loss—
it can be one of hope, strength, and a brighter future.
From our family to yours, thank you for listening—and for standing with Gurmoh
Time is critical. Every moment matters.
For more information visit
Social media
Instagram
Facebook
Tik tok
https://www.tiktok.com/@spg4hopefoundation?_r=1&_t=ZS-95Pj0O2SMau
Media
https://www.ctvnews.ca/vancouver/article/high-tech-health-care-only-for-the-ultra-rich-bc-toddlers-case-spotlights-inequality-of-gene-therapy/
https://www.msn.com/en-ca/news/canada/bc-says-it-can-t-fund-therapy-for-child-with-rare-neurological-disease/vi-AA20CQwg