Madden's journey began when his parents noticed what appeared as a rash or eczema on his body. But soon the rash on the two-year-old Calgary toddler developed into bloody blisters and he couldn’t fight off a common cold. It became clear to clinicians at the Alberta Children's Hospital that something more serious was involved in the diagnosis.
Researchers placed Madden in a research study at the Alberta Children’s Hospital Research Institute to sequence his DNA and within a few days they had discovered he had a very rare condition.
The disease is called Ipex syndrome and leads to the dysfunction of regulatory T-cells and subsequent autoimmunity. The condition is fatal unless treated with a bone-marrow transplant. Madden was successfully matched with a sibling and received his treatment at the Alberta Children's Hospital.
Madden is healthy now and playing at home like other toddlers. On Rare Disease Day (February 28), we honour the children with rare disorders and their families for their courage. And we thank our community of donors whose gifts are making a real difference.