While sickle cell disease wasn’t necessarily a blessing for Jason, Annette and their daughter Maya Bogle, becoming part of The Hospital for Sick Children (SickKids) family felt like a godsend.
When Maya was two years old, she developed a stubborn cold. She was diagnosed with pneumonia and given antibiotics and a puffer, but she only got sicker. She wasn’t eating well, didn’t want to play and her fever was persistent. One day, she became so ill that her eyes rolled back in her head. Terrified, her parents rushed to their local hospital. After extensive testing, Jason and Annette learned that Maya had sickle cell disease.
Sickle cell disease is an inherited blood disorder that affects the shape of red blood cells. Typically, they are round and move easily through small blood vessels to carry oxygen to the body. However, sickle cell disease patients have stiff, C-shaped red blood cells, which get stuck in the vessels and clog blood flow. This blockage can cause anemia and intense pain.
Maya’s family is grateful to be at SickKids, a global leader in sickle cell disease research and care.
ContributedThough Jason and Annette knew they both carried the sickle cell trait, Maya’s diagnosis was a shock. Her condition had evaded detection by Ontario’s newborn screening panel. This may be because Maya has a rare variant of hemoglobin, a protein that carries oxygen. Unlike many children with sickle cell disease, Maya doesn’t experience the typical symptom of severe bone pain. Instead, she develops symptoms in her lungs and is prone to pneumonia. Although this means Maya must take precautions and can’t run laps around the playground like her peers, she is thriving.
Since her diagnosis, six-year-old Maya has walked the halls of SickKids more times than she can count, sometimes staying for weeks at a time. Throughout all these hospitalizations, two things have remained constant — the resilience of Maya and her parents, and the dedication of the highly skilled SickKids team. “I won’t bring my child to any other hospital,” says Jason. “I’ll never move far away from SickKids.”
SickKids is a leader in sickle cell disease care and research, both locally and abroad. Through the Centre for Global Child Health, SickKids teams have partnered with health-care institutions in Ghana and several Caribbean nations to develop newborn screening programs, expand treatment programs and build local health-care capacity.
Over the years, Maya and her family have learned a lot about sickle cell disease through the teaching and care of her medical team at SickKids. Maya’s family is eager to help dispel myths and raise awareness about the disease and the work SickKids does to help families manage the condition and advance research for new treatment options.
Maya’s mom describes her daughter as a young fashionista who loves to be in front of the camera.
ContributedWith a blended family of five children, Jason and Annette have a lot of love in their lives. And becoming part of the SickKids family has only added to that love. The friendliness and warmth of the SickKids staff have made every hospital visit a positive experience for Maya and her family. “Maya’s medical team is so friendly,” says Maya’s mom. “They all know and love Maya, and it feels like family when we are there.”
This winning combination has helped Maya battle sickle cell disease and become an outgoing girl with a larger-than-life personality. Annette describes Maya as a young fashionista with an infectious smile, who loves to be in front of the camera and design clothes for her dolls. Thanks to her strength and the expertise of SickKids staff, Maya’s future is looking bright.
“We want Maya to live life to the fullest,” Annette says. “She is such a brave girl – I’m proud of her every day.”
Torstar, the Star’s parent company, is in a fundraising and educational partnership with The Hospital for Sick Children to help raise $1.5 billion for new facilities. This content was produced by SickKids as part of that partnership.
