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.”