This is the perfect opportunity to spread awareness about how CF affects people like our sweet baby Alivia. She doesn't know it yet, but she has a lifetime of medications and breathing treatments ahead of her. She is doing very well so far with the help of medication. We give her enzymes before every feeding so she is able to gain weight, because she is pancreas insufficient. Soon we will start her on a nebulizer. Without medication and treatments, the life expectancy for people with this disease is around twenty years old. Thankfully, there has been some amazing medical advances for those living with CF over the past few years because of funds raised for research. We are beyond thankful for modern medicine and all the research being done. However, there is still no cure, and certain medications are gene specific, meaning just because it works for one person, doesnt mean it will work for the next. One out of every 25 people are carriers for this disease..and still, not a lot of people are familiar with it. If both parents are carriers, the baby has a 25% chance of having this disease. I didnt know much about it until my nephew was diagnosed a couple years ago. Before him, there was no family history of this thing. I was tested for the gene during pregnancy, found out I am a carrier. Kevin was then tested, and his came back negative; we were told that we were okay. (We recently just found out thru more extensive testing that he does carry the gene). At just one week old, we got the news at Alivia's first pediatric appointment. She has cystic fibrosis. The world stopped. My heart broke. I could hardly breath. It didnt seem real. I couldnt accept it. I was convinced the test was wrong. How could our perfect angel be born with this awful condition? Honestly, it still doesnt seem real. I've been at war with myself, not wanting to believe it, not wanting to bring more attention to it- making it "more real". But keeping quiet about it isnt going to make it go away, and it certainly isnt helping the situation. We need to get loud for those living with CF. We need to advocate for our little warriors. We desperately need to find a cure. We need hope. Every day I have to remember to choose faith over fear because this is terrifying but living in fear and the "what ifs" is no way to live. Its unhealthy. We need to be strong as ever for our angel, and set good examples so she has a good attitude and remains strong when times get tough.
We started a team and will be walking for Great Strides, supporting those with CF, raising money for the Cystic Fibrosis Foundation. Anyone is welcome to join our team and walk. It's free, donations are optional. We set a goal of $3,000 because this is everything to us. The research that this money will fund could mean a potential cure for our baby girl. She is our life and we will fight for her to have the best life possible. We can participate in this walk in person or virtually, and it means THE WORLD to us having our loved ones participate!
We hope to see you all there!
Together we can make a difference
More about Cystic Fibrosis and Great Strides:
Join our team and help us get one step closer to a cure for cystic fibrosis!
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows - progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease. We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let's make CF stand for Cure Found!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.