Phoenix defies the odds with ultra-rare genetic disorder

At 3 months old, Phoenix was diagnosed with Marshall-Smith Syndrome, an ultra-rare genetic disorder that only 56 people in the world have been diagnosed with. Most children with Marshall-Smith Syndrome don’t live past age 3. Phoenix is now 9. The care that Phoenix receives at Children’s Wisconsin has been paramount to her survival. She sees gastroenterology specialists, pulmonary and otolaryngology specialists, as well as the plastic surgery and complex care team to coordinate specialty care needs. With complex care needs, Medicaid helps cover Phoenix’s regular clinic visits and medical care, but there are often challenges getting special equipment she needs covered. Despite all of the obstacles she faces, Phoenix attends school and she loves art and music.