Pretty much from the day he was born, Madden suffered from severe skin issues. His mom and sister had experienced childhood eczema, but his was much worse. He was completely covered in bloody blisters. No cream or eczema treatment was helping. To provide some relief, his parents would put him in wet pajamas with a dry set over top. A dermatologist sent them for blood work and found that he had seriously low platelets, so they were referred to the ACH. Although doctors here suspected he had an immune disorder, conventional tests were inconclusive. Without a diagnosis, his parents worried what the future held for their son. Then, on Mother’s Day last year, two-year-old Madden caught a virus. Most kids could have managed it and recovered easily, but Madden had to be hospitalized, got sicker and sicker… and ended up in the intensive care unit.
Since all other tests had been exhausted, and his condition was worsening, the genetics team squeezed him into a research study that involved running Madden’s DNA through state-of-the-art Next Generation DNA sequencing technology. They ran the sequence on a Monday… and had their diagnosis on Friday! Madden had a rare immune disorder known as IPEX. Left untreated, IPEX is fatal. The only cure for it is a BMT. Hospital specialists performed his first one on Sept 22, (Madden’s 4-year-old sister Everleigh was the donor). After 7 months in hospital, Madden was able to go home just in time for Christmas and today is doing much better – enjoying playing with his motorcycle toys and pretending to be a hockey goalie…He’s now preparing for a second transplant.
Madden’s parents are extremely grateful that ACH saved their son’s life. Incredibly, their story doesn’t end there. Danielle told their doctors that Madden’s cousin, Nolan, had very similar symptoms, so they sequenced his DNA as well – and discovered Nolan has the same condition. His BMT is set to take place in March.Two lives saved thanks to amazing specialists and community support for the Next Gen technology and BMT advancements!