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Born April 15, 2002, Emma-Rose Grenon-Lemaitre was a special little girl who touched your heart no matter who you were or what you believed in. In her toddler years, her parents, Jim and Carole, noticed a different course to her growth and development than their older daughter Adele. After many intuitive visits to various medical professionals, Emma-Rose was diagnosed at 21 months of age, with a terminal disease identified as Hurler Syndrome (MPS I).

This was not an expected life path for the Grenon-Lemaitre family, as this disease would force them into a new world, that of the unknown, that of no cure. In fact, in the summer of 2009, due to the overwhelming day-to-day pressures of caring for a child with special needs, they sold their house in Markham, Ontario and moved to Sherbrooke, Quebec to be closer to their extended family. Life in Sherbrooke continued as “normal” as possible for the Grenon-Lemaitre family for the next 9 years.

Sadly, on October 30, 2018, our hearts were broken as our sweet Emma-Rose passed away peacefully surrounded by her resilient family. Her beautiful soul touched many lives and was the reason why thousands of people learned about MPS diseases. 


Emma-Rose taught us to appreciate life’s everyday miracles and to be grateful to those who love us. Her legacy and memory will continue on earth through the Emma-Rose Fund and the support that it provides to all families of children with MPS diseases.  

You have not lived a perfect day, unless you
have done something for someone who
will never be able to repay you.

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