Eight-year-old Madden is proof that cutting-edge child health research and innovative care can change a family’s history. And proof that community support for both saves lives.
Forty-two years ago, Madden’s uncle Brian became ill and passed away before his first birthday. No cause was found, no diagnosis was ever made. Years later, soon after he was born, Madden began experiencing symptoms eerily similar to his late uncle. Baby Madden was plagued with chronic diarrhea, severe blistering all over his body and was failing to thrive. Conventional tests were unable to provide a diagnosis. Then, when he was two, Madden caught a common virus and became so sick he was admitted to the pediatric intensive care unit at the Alberta Children’s Hospital. As his condition became life-threatening, his doctors were able to enrol him in a study led by researchers at the hospital and the University of Calgary. Using state-of-the-art technology, they sequenced his DNA and had an answer in just five days.
Madden had IPEX syndrome, a rare immune disorder that is usually fatal in children if not diagnosed rapidly. With Madden’s sister Everleigh as a perfect bone marrow transplant (BMT) match, specialists were able to transplant a new immune system into Madden’s body. Both the DNA sequencing technology and advancements in the BMT program were supported generously by community donations. Of course, we know every cure begins with research.
“We are beyond thankful to have this technology and this level of expertise in our own backyard,” says Madden’s mom, Danielle. “Without those doctors and researchers and the community that gave back to the hospital, we wouldn’t have a son.”
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“We wouldn’t be anywhere near where we are without the level of support we receive from the community,” says Dr. Francois Bernier, head of medical genetics at the Alberta Children’s Hospital. “Philanthropy is the engine of innovation and discovery for children’s hospitals and that generosity is transforming care for thousands of kids like Madden.”
Today, Madden is curious, funny and full of energy – which is perfect for playing his favourite sport in the world, hockey. He is also 100% cured!
Remarkably, Madden’s cousin, Nolan, had also been experiencing similar symptoms. Danielle urged her sister to meet with Madden’s specialists. They sequenced Nolan’s DNA and also diagnosed him with IPEX syndrome. After a successful BMT at the Alberta Children’s Hospital, Nolan was also cured and today is healthy and happy.
More than 1,000 researchers, trainees and staff at the Alberta Children’s Hospital and the University of Calgary have committed to advancing knowledge, finding gentler treatments and discovering cures specifically for children. Community support for research helps to advance care. Learn more.