Calgary teen cured of childhood illness thanks to ACHRI research

When Eleora Ogundare was only eight years old, she received a stem cell transplant that cured her of sickle cell anemia thanks to leading paediatric research conducted by members of the Alberta Children’s Hospital Research Institute (ACHRI). 

Now eight years later, the young Calgarian is a healthy, thriving teenager who enjoys walking her dog, playing sports and spending time with her family.  

“I'm just so grateful to them for helping me become the person I am today. Without them, I don't know where I'd be right now,” she says. 

Ogundare was born with a genetic blood disorder that caused her to experience severe pain in her stomach and back. After she moved from England to Canada in 2015, care teams at the Alberta Children’s Hospital diagnosed her with sickle cell anemia. 

That same year she underwent a stem cell transplant, which involves replacing a patient’s blood cells with stem cells from a family member. While the odds of finding a perfect match in a family member are only one in four, Ogundare was fortunate that her older brother Zuriel — her only sibling at the time — was an exact match and became her donor. 

ACHRI was the first to adapt an adult sickle cell treatment protocol to treat children with fewer side effects, which led to an international clinical trial to study outcomes on a larger scale. At the time, the Alberta Children’s Hospital (ACH) was the only paediatric centre in the world to offer this treatment.

The results of the trial have since changed how care for sickle cell anemia is offered around the world, with ACHRI research and ACH clinical teams now recognized as global leaders in curative therapies for this disease. 

Without curative treatments, sickle cell anemia becomes a chronic condition that can cause organ damage, increases risk for stroke and heart problems, and shortens life expectancy to 55 to 60 years. 

“I'm just really grateful that it worked. My blood before was really dangerous and I know that not a lot of people survive with it,” says Ogundare.  

Ogundare’s story of healing is just one of many made possible thanks to the leadership of ACHRI at the Cumming School of Medicine (CSM). 

The CSM is celebrating the creation of ACHRI 15 years ago through a partnership between the University of Calgary, Alberta Health Services and the Alberta Children’s Hospital Foundation. 

Saifa Koonar, BComm'92, MBA'02, president and CEO of the Alberta Children’s Hospital Foundation, says the partnership unites leaders in research, education and clinical care to tackle some of the most pressing child health issues. 

“ACHRI has brought together the very best and brightest researchers collaborating across a cross section of institutes, departments and faculties, from education to engineering, from social work to medicine, they've all come together to find better cures and new treatments and new discoveries to help children,” says Koonar. 

Those discoveries include the institute’s research into advanced approaches to neurocritical care as well as brain computer interface (BCI), which allows children with complex physical needs to power devices through brain activity. 

Dr. Francois Bernier, MD, director of ACHRI and professor of medical genetics and paediatrics, says the partnership is the engine of innovation for the institute’s research.  

“This partnership allows you to be really creative, to push the envelope and to be the kind of space where everyone aspires to be as a scientist and a clinician,” says Bernier. 

• Read how all the research institutes at the Cumming School of Medicine are sparking healthier lives through philanthropy

Changing children’s lives in Calgary and beyond 

Fifteen years after ACHRI was established, the institute is transforming the lives of children and their families. The institute’s excellence was critical to UCalgary’s decision to declare child health an institution-wide focus for research — the first university in Canada to do so.   

The Child Health and Wellness research strategy launched in 2020 and was developed in consultation with members across UCalgary, the Alberta’s Children’s Hospital, the Alberta Children’s Hospital Foundation and the community.  

Its goals include conducting internationally recognized child health and wellness research, becoming national and international leaders in innovative and transformative research, advancing national leadership in community-partnered child-and family-centred research, and leading the way in evidence-informed health promotion and policy development. 

“Child health research is life-trajectory research. If we can give kids a healthier start early on in life or find gentler and kinder cures to save them from a lifetime of troubling side-effects, we will ensure a healthier, more prosperous future for these children and their families and for society overall,” says Koonar. 

ACHRI has continued to lead the way in child health and wellness research with the One Child Every Child initiative.  

In April 2023, UCalgary received $125 million from the federal government’s Canada First Research Excellence Fund — the largest grant ever awarded to a university in Alberta — to launch the initiative. Together with the Alberta Children’s Hospital Foundation, UNICEF Canada, Children’s Healthcare Canada and organizations from around the world, One Child Every Child was established to make child health research a national priority. 

Informed and guided by UCalgary’s Indigenous Strategy, ii' taa'poh'to'p, One Child Every Child brings together a diverse group of collaborators including Canada’s child health research institutes, partners from around the world and the community. 

With a focus on equity, diversity and inclusion, the initiative seeks to improve all aspects of child well-being beginning with the health of pregnant women through all stages of childhood from treating chronic conditions to neurodevelopment needs. 

“It’s an extremely unique and empowering program,” says Bernier. “We have priorities of looking at dismantling inequities, addressing some of the greatest challenges in child health by addressing both biological and psychosocial determinants of health and wellness. We’re leveraging a parallel paths approach to Indigenous engagement, where Indigenous priorities are led by Indigenous scholars, working together with non-Indigenous scholars in this approach to co-support each other.” 

Hope for kids with sickle cell anemia 

Ogundare, who has her sights set on becoming a neurologist after she graduates, has come a long way since her transplant.   

“I've started driving and I want to try doing rugby this year, which I probably would not have been able to do if I was still sick,” she says. 

She has also started a line of hair-care products with her mom, Eugenia. The treatment Ogundare underwent for sickle cell anemia caused her to lose her hair — a big source of her identity — so she is hoping to empower other young Black women with their own hair. 

“I'm opening myself up to different things. I'm really happy with how everything's turned out.” 

This outcome for Ogundare wouldn’t be possible without the partnership that formed ACHRI, inspiring hundreds of people to make gifts both large and small — all contributing to healthier lives.  

“We are so fortunate to have a community that believes in better care and better outcomes for our children,” says Koonar. “It's the promise of a better society for all when we invest in our children.”