Madden, 7, is alive today thanks to the Alberta Children’s Hospital. But he also wouldn’t be here today without his big sister Everleigh and the support of our generous community. 

Right from birth, Madden was very sick and suffered from severe skin issues. He was covered in so many bloody blisters, which no cream or treatment could soothe, that his parents would dress him in wet pajamas with a dry set over top to provide some relief. A dermatologist sent them for blood work and found that he had low platelets, so he was referred to the Alberta Children’s Hospital. His doctors suspected he had an immune disorder, however, conventional tests were inconclusive. Then, when he was two, Madden ended up in the Pediatric Intensive Care Unit for a virus he couldn’t fight off. Left without a diagnosis, Madden’s parents worried about what the future held for their son. 

Since all other tests had been exhausted, and his condition was worsening, the genetics team at the Alberta Children’s Hospital was able to squeeze him into a research study that involved running Madden’s DNA through state-of-the-art Next Generation DNA sequencing technology. This technology, made possible by our generous community, revealed in only a matter of days, that Madden had a rare disorder called Immune Dysregulation Polyendocrinopathy Enteropathy X-linked (IPEX).  

“Madden had a genetic disease that caused his body’s immune system to attack itself,” says Dr. Francois Bernier, Head of Medical Genetics, Alberta Children’s Hospital. “It is just about always fatal in children, unless you diagnose it rapidly.” 

His only cure was a Bone Marrow Transplant (BMT) to give him a new immune system. The Alberta Children’s Hospital is the largest BMT centre in western Canada, and thankfully, Madden’s big sister Everleigh was a perfect match to be his donor.  

“He went from severely ill and dying to being perfectly healthy,” says Bernier. 

After two BMTs, Madden is cured, and a happy, healthy, energetic boy.   

For the incredible courage and strength that he has shown to live above his diagnosis, Madden has been named our 2022 Champion, part of the Children’s Miracle Network Champions Program that celebrates the life-saving, life-changing care taking place at children’s hospitals across the country. As Champion, Madden will be the official ambassador for the 100,000 kids and families cared for at the Alberta Children’s Hospital each year. 

“Madden’s story is proof of how our generous community supporting advancements like DNA sequencing and BMT technologies can help transform care at the Alberta Children’s Hospital, and we are deeply grateful,” says Saifa Koonar, President and CEO of the Alberta Children’s Hospital Foundation. “Seeing Madden today, so sweet and smart, with a desire to share his story to help the hospital and inspire hope – which is exactly what the Alberta Children’s Hospital is all about – makes him a true champion.” 

To his family, he will always be a Champion, thanks to the experts at the hospital, and people who help make it the world-class facility that it is. 

“Without those doctors, researchers and people in our community who give back to the hospital, I wouldn’t have a son,” says Madden’s mom Danielle. “There are no words as to how grateful we are.” 

About 25 percent of kids at the Alberta Children’s Hospital – and across the country – are in hospital due to an underlying genetic condition. Thanks to Genome Canada and generous community support, a new large-scale research initiative is bringing state-of-the-art genomic sequencing to the hospital bedside so more kids like Madden can be diagnosed faster.