My name is Mia Gaudenzi and I’m 12 years old. I was born a seemingly healthy baby until around 3 years old when I became ill with pneumonia regularly. Doctors just thought I was unlucky until I had my sweat chloride tests to rule out CF. The first result came back borderline the second came back negative and the third came back positive for cystic fibrosis. I remember my mom being overwhelmed but relieved that we finally had an answer.
The next year was hard for me, getting used to new physiotherapy and twice daily treatments while still being hospitalized and sick very often. I didn’t understand why I needed to do all these extra things other children didn’t have to and most nights I would cry during physiotherapy. As a child I missed a lot of school days due to being sick or in hospital so we tried home-schooling for a year and to my mom’s surprise I did really well and so we’ve kept home-schooling ever since. Over the years I’ve been pretty “healthy” lung wise but I began getting terrible pancreatitis flare ups which I still suffer from today. Just this past September 2018 I was diagnosed with severe juvenile idiopathic scoliosis and was told that I would need a spinal fusion to correct and straighten my spine for fear that it would crush and damage my already frail lungs.
In November I had my surgery at Sick Kids; I have 2 titanium bars and 20 screws in my spine and never felt (and looked) better! Just recently I have become a patient ambassador at the Hospital for Sick Children, telling my story and raising awareness while raising money for a new hospital. CF never held me back from any activities I’ve wanted to do or any places I’ve wanted to visit, my mom and I love to travel and we’re big Disney fans and I hope one day to visit Paris, France.
A world without cystic fibrosis means less time working on my health through treatments and hospitalizations and more time being a kid. Being born with CF has taught me that life is short and to always seizes the day no matter what!
