Alex is a determined, stubborn young lady who always proves her doctors wrong. From birth she has required medical intervention including heart surgery, multiple airways surgeries, tube feeding, home oxygen,a stint on TPN, countless PICU admissions, procedures, scans and tests.
Alex's rare syndrome doesn't have a cure, but instead we manage synptoms as they present. She currently seeds a multitude of specialists, therapists and practitioners. Despite her hand in life she is outgoing, adventurous and has a wicked sense of humour!