Grace's Story

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Meet Tiny Light Grace. Grace is an amazing big sister. She loves to snuggle in bed with her little brother every morning. She loves the swings, and is an amazing bike rider. Grace loves getting into mischief, and is often found Skyping her friend Nathan!

When Grace was three-years-old, she developed a cold. Her parents began to worry when it lasted longer than her usual two-week colds. They became very concerned when Grace’s face began to swell. A few weeks later, Grace was diagnosed with Focal Segmental Glumeriosis, a rare kidney disease. This meant that her kidneys were not functioning properly, and were letting all things, good and bad, flow out of her kidneys.

Because of a lack of information, her parents expected a round of steroid treatment to take care of the problem. In reality, their journey was just beginning. It has been difficult watching their daughter, as strong as she is, suffering through complications of being immunosuppressed, and at the end stage of chronic kidney disease, while waiting for her kidney transplant. Still, Grace never complains. Even while she was on life support, she fought hard to communicate even though it was hard; not wanting her loved ones to worry.

Grace does what she knows she has to do! She drinks three liters of fluid daily, and takes a multitude of pills to try to maintain her kidney’s health. Grace’s parents do what they can to decrease risk of infection, often having to isolate Grace. They are thankful for the families that they have met with similar circumstances. “Although no two children even with the same disease are the same, the sharing of experiences has really normalized our exceptional life circumstance.” They are thankful for all of their support, especially Grace’s Grandparents…”Our backbones”.  

Story by Angela Stephen-Dewhurst