A Glimmer of Hope From The Great White North
When Abbigail was around eighteen months old, she became very sick. For six weeks, she was diagnosed with different illnesses. The doctors kept telling her parents, Shawn and Erin, that she most likely contracted what they described as ‘childhood viruses’ from daycare. However, things continued to get progressively worse. Abbigail stopped eating and drinking. She began to experience daily fevers that would disappear in the middle of the night but quickly return the following afternoon. It was a vicious cycle.
The family’s situation took a different turn after what seemed to be a routine trip to the emergency room. The nurse and doctor on call that evening took notice of Abbigail’s symptoms, and they knew something wasn’t right. Abbigail’s lab results found that her inflammation markers were high, higher than normal for a child of her age. She was soon sent to the IWK Health Centre in Nova Scotia, Canada, where she met Dr. Adam Huber, a pediatric rheumatologist.
Elizabeth and Abbigail had unexplained periodic high fevers, rashes, joint pain, painful oral ulcers, headaches, stomach pain, and extreme fatigue. Their parents knew that they needed to start seeking the appropriate help and pediatric care. Dr. Huber suggested that they reach out to the National Institutes of Health. After three years of patience and waiting, they received the call on a late November eve.
Both Erin and Shawn went through a mixed bag of emotions: gratitude and promise, mired with anxiety. In a short span, they needed to get their daughters to the NIH for their clinical trial. They needed to make their way to the United States and then to the National Institutes of Health by January of the following year. Fortunately, their close friends, community members, and church came together and helped. Upon arrival and after going through various examinations, the girls were diagnosed with Periodic Fever Syndrome.
The trip to the NIH was the beginning of the family’s medical journey at The Children’s Inn.
“The Children’s Inn is such a comforting and encouraging environment to be in,” Erin and Shawn said. “The staff and volunteers always do their best to make us feel at home.”
Elizabeth and Abbigail have benefited from The Inn’s extracurricular activities, virtual tutoring program and, of course, The Inn’s favorite furry staff member: Zilly.
Now back in the Great White North, due to COVID-19 travel restrictions, both parents noted that dealing with chronic illnesses can be a lonely journey. “People don’t understand how quickly our girls can go from feeling fine to feeling awful,” they noted. “Colds, flu, and vaccinations—yes, those too—can trigger a flare-up for the girls.” However, this hasn’t stopped the family from finding a silver lining. They’ve decided to fight back by creating a life of joy with family, home, and values as their north compass and fun-filled outdoor activities as their motivational force. In fact, Abbigail and Elizabeth are both enjoying time with their youth group and local swim team—a sense of normalcy, life, and, despite the challenges, hope.
Because of your commitment and support, Elizabeth and Abbigail can pursue groundbreaking treatments at the National Institutes of Health while staying free of charge at The Children’s Inn at NIH.