By Bhavana Gopinath –
Imagine a situation so overwhelming, that it physically and emotionally depletes you; taking another step or facing another moment seems inconceivable. Long-distance runners know that feeling; they call it the “wall.” It is the physiological equivalent of being completely frayed. To get past that wall, runners dig deep: just ten seconds more, just a few steps more, they tell themselves. And so they persevere.
Julie Drury, the athlete, knows all about pushing limits: she’s played varsity basketball, Ultimate Frisbee, and participated in the Boston Marathon.
Julie Drury, the mom, has hit the wall time and again, and somehow found the strength to keep going.
Julie’s daughter Kate, genetically fragile, spent much of her childhood in the hospital. Julie took up running as a way to cope, and also to connect with Kate; during tough runs, Julie would focus on her daughter’s courage in the face of pain to push through her own wall.
Kate was born healthy in 2007, but then had developmental delays, hearing loss, and periodic bouts of vomiting, intermittent fever, extreme lethargy, and cessation of eating and drinking. After many visits to CHEO, several tests (including genetic testing), and teamwork with international institutions, doctors realized that she had a rare mitochondrial disease. At CHEO, Dr. Pranesh Chakraborty, Kate’s metabolic physician and Director of Newborn Screening Ontario, and his team identified (in 2011) the TRNT1 gene that caused Kate’s condition. The condition is called SIFD – an acronym for Sideroblastic anemia, Immune deficiency, periodic Fever, and Developmental Delay. It is progressive, degenerative, and extremely rare. Kate was the first child to be officially diagnosed with it; CHEO estimates that there are less than ten families worldwide whose children have SIFD.
Kate’s life was a medical odyssey: she had at least 40 visits to CHEO, underwent every invasive and painful test imaginable, and had cochlear implants, and therapy. Her parents had to live with the relentless uncertainty of a disease that had yet to be discovered. Through this vortex, Julie and husband Brian worked as a unit, managing the harrowing stresses of caring for a seriously sick child, and providing some semblance of normal life for their older son Jack.
Julie, who’d worked as a Senior Policy Adviser at Health Canada, used her professional skills to learn everything she could about SIFD and to advocate for a coordinated interdisciplinary team to manage Kate’s medical challenges. Kate was the first child admitted to CHEO’s Coordination of Complex Care Program in March 2010.
Despite everything, Kate “always woke up happy and ready to go, even when she was sick,” Julie says. In many ways, she was a typical little girl who loved Dora, sparkly shoes, her Cinderella dress, and pink and purple. She learned to sign and went to school. Her fragility didn’t deter her from doing what she wanted – swimming, gymnastics, summer camp.
Kate, aged 8, died on November 30, 2015, from complications after a bone marrow transplant. She died at home, in Julie’s embrace with Brian and Jack watching over her.
With Kate’s death, “we all fell off a cliff,” says Julie. “We have injuries, but we just put one foot in front of the other.” While enduring the crushing agony of losing a child, Julie knows that the family will get through Kate’s absence and find solid footing. To help, Julie has her caring network of loyal friends. They supported her through crises by dropping off meals, watching Jack. They also encouraged her to take up running. Julie still runs. She says running somehow spiritually connects her to Kate.
On a recent pre-dawn run, Julie sensed Kate’s presence, as though she was hugging her from the back as she liked to do. Julie turned around and saw a spectacular sunrise, in Kate’s favorite pink and purple colors. Just like the sunrise the morning after Kate’s death. For a few moments, she felt peace.
“Kate is gone,” she says. “But I have her with me.”
Run to support research
Every year, Julie Drury organizes a group of charity runners for MitoCanada to raise awareness of, and support research into mitochondrial diseases. This Ottawa Race Weekend, Julie’s team will honor Kate by wearing pink at the race, and by donating all funds raised to CHEO for mitochondrial disease research. Julie is hoping to raise $42,000. Details will be available shortly on Julie’s blog, searchingforsolidfooting.com.
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