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Meet Amaka

Imagine living your life with a genetic blood disorder which causes unbearable joint pain, life-threatening lung complications, as well as the risk of stroke, heart disease and blindness. For up to 7,000 Canadians who suffer with Sickle Cell Disease (SCD), this is their reality.

Thanks to community support, the Alberta Children’s Hospital is now nationally-recognized for providing children in our community with a chance to live SCD-free.

Sickle cell disease is a genetic life-long blood disorder characterized by red blood cells that resemble the shape of a sickle. Normal red blood cells are round and flow easily through the body. “Sickled” cells tend to get caught in the joints and organs, causing inflammation and pain.

“Not that long ago, we were limited medically in what we had to offer to help these kids. We were only able to address their symptoms by providing transfusions, antibiotics or hospitalization for severe pain management,” says Alberta Children’s Hospital bone marrow transplant (BMT) specialist, Dr. Greg Guilcher. “It’s only been in the last few years that we’ve been able to offer BMT as a possible cure to these patients and their families.”

That cure, however, had a price. Parents considering BMT were taking a significant risk up front, hoping to prevent suffering in the future for their child. Complications from BMT ranged from the development of another potentially life-limiting chronic condition (graft vs. host disease) to infertility to life-threatening transplant-related infections.

Knowing all those risks, Thaddeus and Otonye Ejim made the difficult decision to give their four-year-old son, Ekene, the chance of a life free from the debilitating pain and suffering of SCD. In August of 2009, thanks to the Alberta Children’s Hospital, Ekene became the first sickle cell patient in western Canada to receive a BMT to cure him of his disease. While his transplant had its difficulties, his parents were thrilled to know that Ekene would now grow up to lead a happy, healthy life.

Sadly, their excitement was soon dampened by the fact that Ekene’s new baby sister, Amaka, was diagnosed with sickle cell disease, as well. The family was advised to wait until she was closer to five years old before considering the procedure.

Thanks to generous donor support for the BMT program, over the last five years specialists at the hospital have developed nation-leading expertise in successfully administering Reduced Intensity Conditioning (RIC) BMTs as a cure for SCD.

Reduced Intensity Conditioning (RIC) BMT requires less toxic doses of chemotherapy to kill off the child’s flawed blood system prior to infusing healthy donor cells. “Patients who have a matched sibling donor are able to tolerate the RIC transplant with few effects,” says Dr. Guilcher. “As a result, more and more families are choosing this course of treatment as a way to cure their child. It’s no longer about simply managing the disease. We have the ability to get rid of it altogether and that’s very exciting for these families.”

Such was the case for Amaka. Her transplant experience was so uneventful she was only in the hospital for a few weeks, whereas Ekene spent months recovering from the procedure. “It was so much easier the second time around,” says Otoyne. “Knowing that both our children have been cured from sickle cell disease brings us great joy. We are so grateful for the incredible doctors and nurses who helped us throughout this entire experience.”

Last year, four children were cured of sickle cell disease with a RIC transplant at the Alberta Children’s Hospital with up to six more planned for the near future. “Calgary is definitely leading the way in this new form of treatment,” says Dr. Guilcher. “Community support for research and equipment has made this cure possible for families in our community. The results we are having are inspiring other hospitals to offer the same hope to their patients. We are ultimately making a difference for kids and families here and around the world.”

Under the leadership of Dr. Greg Guilcher, the Alberta Children’s Hospital is the only Canadian team participating in STAR - the newly- formed Sickle Cell Transplant Alliance for Research. Comprised of centres from across North America, the Alberta Children’s Hospital will play a key role in sickle cell disease clinical trials development and execution. As members of STAR, the Alberta Children’s Hospital transplant team will be able to offer more innovative therapies, including novel BMT options for those without sibling matches.

Community support for BMT makes it possible for Calgary specialists to provide world-class leadership and care.

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