Grace

11 days. Those few days equal the only time Grace spent at home with her family when their world completely upended.

Grace was born on January 27, 2022. She spent her first 12 days in the Neonatal Intensive Care Unit (NICU) and four more days in the Pediatric Inpatients Unit in Regina. Grace was then able to leave the hospital with her mom and dad and return home to the family farm in Raymore, Saskatchewan.

Upon arriving home, Grace’s mom Amanda and dad Paul realized something was seriously wrong with their daughter. “It sounded like she was working so hard just to breathe. Every breath seemed like a struggle for Grace,” said Amanda. Amanda and Paul packed up the car and drove straight back to Regina.

Upon arriving and being assessed, the decision was made to transport Grace to Jim Pattison Children’s Hospital (JPCH) via air ambulance, a decision that Amanda originally did not want. “I didn’t want to go, I resisted every way I could. I just wanted to be home with my family, I didn’t want to get on that plane,” Amanda said about the experience.

But eventually, Amanda and Grace did get on that plane and it’s a decision that saved Grace’s life. It was at JPCH that Grace was diagnosed with a rare disease called Klippel-Feil Syndrome Type 4. Grace is one of 15 documented cases of Klippel-Feil Syndrome Type 4 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 so rare that there isn’t much information on the disease, which brought a new challenge to the medical team in charge of Grace’s care.

Amanda credits the work done by Dr. Naidu and team at JPCH for keeping Grace alive. “Dr. Naidoo worked extra hours just to do research on Grace’s condition to ensure that the best care possible was available for her. We wouldn’t be here if it wasn’t for the work she did,” said Amanda.

In the months Grace has spent within the walls of JPCH, she has undergone five surgeries, many unknowns, and even more complications but that hasn’t stopped Grace from fighting.

Just like in Grace’s fight, there have been good and bad days for Paul and Amanda too. With a condition so rare there is not much information for their family on life expectancy for Grace or what her future will look like which has been a struggle for Amanda. “Not knowing what it’ll be like once we leave JPCH is the hardest part about this. We don’t have any answers and that’s okay but that makes it harder and scarier for us,” she said.

Grace has been residing at Jim Pattison Children’s Hospital since February 24, 2022 and although they will be discharged soon this fall, it won’t mark the end of their time at our children’s hospital. Although their family is closer to other major city centers, because of the incredible care Grace has received at JPCH, Amanda and Grace will be making the two hour trip from Raymore to Saskatoon to receive treatment.

“Everyone at JPCH has taken such great care of Grace, they’re like family to us now. I couldn’t possibly think of Grace receiving care from anyone else but the medical staff at JPCH moving forward, it doesn’t matter that it’s far away, it’s worth it for my daughter,” said Amanda.

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