It is hard to believe this is going to be our fourth walk for great strides! Olivia is now 6 and if you know 6 is a big year for cystic fibrosis, all the hard work and research was put in for Olivia to start Trikafta. Until this point in her life she has never been on a modulator due to her genetic mutations, but with Trikafta she was eligible. Olivia had a rough start at life with only being 3 days old going into her first surgery for the disease. That is when we found out that she was born with a meconium ileus due to cystic fibrosis, Olivia had a ostomy placed right where her belly button was. By the age of 2 Olivia has had 3 surgeries on her bowels, 4 hospital stays and way to many to doctors appointments to count. But since her second birthday, Olivia has been hospital free!
WIth the disease Olivia still has to take around 20 pills and do her 6 breathing treatments and 2 vest treatments a day to stay healthy. Although, Trikafta is the closest thing to a cure for the disease, it is still not a cure and we are all wanting and waiting for that cure.
We are excited to have everyone join us again for another walk for great strides!
Ways to help:
Spreading awareness is a way to get the word out there of the disease. Many people have no idea what cystic fibrosis is and sharing Olivia’s story or about the disease helps.
Donating. It is financially expensive to have a kid with a medical condition like cystic fibrosis. Donating to the foundation helps some of those financial burdens on the family. Donations also help find a cure for the disease for everyone fighting this disease.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.