Story and photos by Julie Carasone
Olivia Maniace, 20, has lived with Cystic Fibrosis since she was born.
Cystic Fibrosis is an inherited disorder that affects the cells that produce sweat, mucus, and digestive juices. According to the Cystic Fibrosis Foundation, Cystic Fibrosis is a progressive genetic disease that causes persistent lung infections and limits the ability to breathe over time.
Olivia’s parents are both carriers of Cystic Fibrosis. They found this out when their older son, Kyle was diagnosed with it.
Part of Olivia’s treatment is called “Chest Therapy Treatment”, where she has have to wear a vest. The purpose of the vest is to loosen the mucus.
“Patients with Cystic Fibrosis, tend to have a mucus that is very thick and sticky that just sits there and where it can harbor bacteria that causes bronchitis and different lung infections, ” says Susan Maniace, Olivia’s mom.
“This is where the vest helps, it moves that mucus along.”
Previously, Olivia would have to plug in the vest and wear it for ½-hour, 3-4 times a day. During that time she had to be stationary. This caused Olivia to miss out on many things, including having to give up college twice.
“The old vest, she has to be stationary, and has to be plugged into the wall. With the portable one, she can go outside, walk outside, go camping, do it in the car, and just have a better quality of life”.
The Maniaces found out about the Colton Underwood Legacy Foundation while Olivia was watching an advertisement for the next Bachelor and they introduced Colton Underwood. They talked about how he started a foundation for Cystic Fibrosis because his cousin had it.
“I told my mom about it and we watched the whole season to the end. I also started following him on social media. I saw on his page that they were giving away a portable vest for one person, per state, so my mom nominated me,” said Olivia.
“I sent them my Cystic Fibrosis video that I had made while in the hospital that showed what I have been going through, my picture, and talked about my foundation that I am starting.”
A few months later the Maniaces received a call that Olivia had won the portable vest, worth over $20,000.
The Colton Underwood Legacy Foundation, flew the family to New York City and presented the AffloVest to Olivia, gave her some legacy apparel, and also gave the family tickets to two Broadway shows “Frozen” and “Harry Potter”.
Link to the Colton Underwood Legacy Foundation video below
What is more exciting for the Batavia resident, is that the Colton Underwood Legacy Foundation is ready to help Olivia with her new foundation.
Her foundation is called “Liv Luv Breathe Care Packages”.
What helped Olivia while in the hospital was any type of care package with an inspirational messages.
“I have created this charity to brighten the day of other teen girls ages 13-19 facing serious illnesses”.
The packages will include inspirational messages, journals, crafts, comfy socks, and any “feel good” items.
“This helps lift my spirits as well as brightening the day of others.”
To make a donation or for more information you can e-mail Olivia at livluvbreathe@gmail.com or go to her Facebook page https://www.facebook.com/livluvbreathe/
FANTASTIC! How wonderful that she was able to get this vest. I hope her organization soars. What a kind hearted young woman.