After Grace was born on January 27, 2022, she had only spent a total of 11 days at home on the family farm in Raymore, SK until being rushed to Saskatchewan’s Jim Pattison Children’s Hospital via air ambulance on February 24, 2022.

The decision to transport Grace to Saskatoon for care was a difficult one. It’s far from the farm and Grace’s mom, Amanda, would be away from her husband, Paul, and their other two children, but it was a decision that would ultimately save Grace’s life.

Diagnosed with a rare disease called Klippel-Feil syndrome type 4, Grace is one of 15 documented cases in the world and the only known case ever in Canada. Klippel-Feil syndrome type 4 is known as a fusion of bones within the spine, bone abnormalities, and low muscle tone. The disease is extremely rare and there isn’t much information on it, which brought a new challenge to the medical team in charge of Grace’s care.

In the months Grace spent within the walls of JPCH, she had undergone five surgeries, many unknowns, and even more complications, but that hasn’t stopped her from fighting. With a disease so rare, there is little information for their family on the life expectancy for Grace or what her future will look like.

After spending 17 months at JPCH, Grace was airlifted to Regina via Pediatric Transport from Jim Pattison Children’s Hospital to be closer to her hometown of Raymore for care.

$5,500 raised of $5,000 goal.

This fundraiser is now complete, but you can always support the Jim Pattison Children's Hospital Foundation by making a donation.


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