This will be the second walk for Olivia! Olivia is a wild 2 year old born on 10/15/16 who was diagnosed with Cystic Fibrosis from the start. Olivia was born with a meconium ileus, which 97% of them are due to Cystic Fibrosis. She spent 14 days in the NICU. In the hospital they do a test called a newborn screen, a screen is done on every baby before they leave the hospital. In 2008 Cystic Fibrosis was added to the screen with the most common mutations. At that screen we found out Olivia's mutations (Delta f508 and 1717-1G->A). After we left the NICU we had the offical diagnosis, a sweat test done. I always say the NICU was the scariest place, especially since my 3 day old had to go into surgery, but the blessing behind it all is that her Cystic Fibrosis was diagnosed so early. We started chest physiotherapy and breathing treatments at 2 weeks old to keep her lungs as clear as we can!
Olivia is pancratic insuficent so putting on weight has been one of the hardest challanges for us this past year. She has to take enzymes before each meal that help her digest the food and gain weight properly along with some higher calorie meals. She also does two breathing treatments a day,when she feels well, and four when she doesn't feel well, that consist of 3 different medications through her nebulizer. We do manual Chest physiotherapy that helps break up mucus in her lungs and at 9 months old she was fitted for a vest that does the same thing! We do the vest for 30 minutes at a time, and keeping a 1 year old occupied that long is a task on its own. Her life may not be normal to most people but, to us this is our daily life and we make it as normal as we can!
I want to do this walk for her because I strongly believe that in her lifetime a cure will be found! We want to help as much as we can to find the cure!
UPDATE:It has been a year since our first great strides walk. Within this year Olivia turned 2 and is such a smat and strong sassy little girl. She loves to go to Disney which shes done a bunch of times this year! She also started gymnastics and music class where she gets to play with other kids her age. We didn't know that since Olivia was born with a blockage in her bowels, that she has a higher susceptability to another blockage, while on a trip to disney world Oliva had DIOS and had to stay in the hospital for a few days, due to her blockage. Luckily we were close to her GI and Cystic Fibrosis team, who took great care of her while she was in the hospital.Also thanks to Arnold Palmer Children's Hospital for doing the same as well.
This year the tripple combonation drug is suppsoed to come to the market for Olivia's mutation. Although at first she will be to young for the drug, eventually the medicaiton will be avalible for her. We are working hard on trying to teach her how to swallow her enzymes and pills so that when the drug is avalible we woulden't have any problems!
Follow my daily cuteness on Instagram: BowsforO
Ways you can help:
Donation: ANY donation will help! We are trying to raise money for a cure! You don't have to donate to be a part of our team Just click "Join our Team". IF you want to donate it will prompt you to a space to donate and also helping with our fundraising is an option too! If you can't come to our walk , you can walk in your local Great strides walk for Olivia! You can also be a Virtual Walker for Olivia if you can't go to any walk! Just click "Join our team"and click Virtual Walker.
Bows for O T-shirts: Bows for O will have a t-shirt for sale that will be sold for $20. Anyone who donates over $250 will get the shirt for free as a thank you from us! Don't forget to take photos of you in your shirt so we can get our team name out there!
Share Olivia's story: Sharing her story is a big way for people to become more aware of the disease! So many people don't know much about the disease and this walk is a great way for us to get out there with our story!
I am excited to see what this year brings! We are so much closer to awareness and a cure!
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.