Alpha-1 Stories

Kelly’s Story

Parenting is challenging at the best of times but juggling childcare while managing a rare disease brings additional heartache to Kelly, who would love to be able to run alongside her three active children.


“My name is Kelly Lynn Newell and I am 32 years old. I am a single mom of three handsome young men. I was diagnosed as a ZZ Alpha in 2017, which gave me the answer as to why I could not keep up with my boys. My lungs are that of a 100-year-old woman and I struggle to keep up with my sons’ boundless energy. I live in the province of Newfoundland, where I am unable to get provincial coverage for augmentation therapy, which would significantly improve my quality of life, and give my sons the active mother that they deserve.

As a Canadian, I am shocked that we do not have a national pharma care system, to help patients like myself who need treatment but cannot afford it. I pray every day that my province will consider providing me access to augmentation therapy, so I may delay the need for a double-lung transplant until my sons are grown men.”



DISCLAIMER: This website is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this website to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder. Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.