Erin McNerney
Welcome to Victory for Vivi! It’s been 4.5 years since we learned of Vivian’s diagnosis of cystic fibrosis and our lives changed forever. We were overwhelmed with so many feelings including fear, grief, and confusion. But we dove head first into our new world and promised to do everything we possibly could for this beautiful baby girl and give her a life she is more than deserving of.
Vivi got the message loud and clear that we were up to the challenge and she’s been showing us what a fighter she is from day one. Vivi’s daily life consists of tons of self care including an hour of breathing treatments (oscillating vest, inhaler, and nebulizer), 8-10
pills just to eat food, formula through her feeding tube, more medications than I can list, and the miracle modulator, Trikafta. That’s just to tackle her CF battle, her daily life also consists of dancing, drawing and art projects, swimming any chance she gets, playing soccer, being goofy with friends at school, antagonizing her baby brother, being a “trickster”, dressing up, gymnastics, riding her scooter and/or bike, collecting tiny things, fort building, obstacle courses and without fail, the best cuddles in the entire world! She is hands down the most amazing human I have had the pleasure of knowing and it’s the honor of my life to be her mother.
This June will mark 2 years since Vivi has started Trikafta. In the last 2 years we have seen her enzyme dosing decrease due to better absorption, her sweat chloride levels improve to almost those of a person without CF, and avoided a hospital stay for 1.5 years! We can’t stop here! There is more to do and a cure is not far from
reach. The support our family has received is beyond and we are forever grateful. Please help us continue to fight for better results, better quality of life, and ultimately until CF stands for Cure Found!
We love you and we thank you!
The McNerneys
Vivi got the message loud and clear that we were up to the challenge and she’s been showing us what a fighter she is from day one. Vivi’s daily life consists of tons of self care including an hour of breathing treatments (oscillating vest, inhaler, and nebulizer), 8-10
pills just to eat food, formula through her feeding tube, more medications than I can list, and the miracle modulator, Trikafta. That’s just to tackle her CF battle, her daily life also consists of dancing, drawing and art projects, swimming any chance she gets, playing soccer, being goofy with friends at school, antagonizing her baby brother, being a “trickster”, dressing up, gymnastics, riding her scooter and/or bike, collecting tiny things, fort building, obstacle courses and without fail, the best cuddles in the entire world! She is hands down the most amazing human I have had the pleasure of knowing and it’s the honor of my life to be her mother.
This June will mark 2 years since Vivi has started Trikafta. In the last 2 years we have seen her enzyme dosing decrease due to better absorption, her sweat chloride levels improve to almost those of a person without CF, and avoided a hospital stay for 1.5 years! We can’t stop here! There is more to do and a cure is not far from
reach. The support our family has received is beyond and we are forever grateful. Please help us continue to fight for better results, better quality of life, and ultimately until CF stands for Cure Found!
We love you and we thank you!
The McNerneys
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