Early in my pregnancy, I learned that I was a carrier of the CF gene and a few weeks later we found out Jason was a carrier as well. This was a surprise to both of us, who didn't know much about Cystic Fibrosis at the time. With both of us being carriers, we had a 25% chance that our child would have Cystic Fibrosis. We tried to remain hopeful for the rest of our pregnancy. On May 3rd, 2020, we welcomed our beautiful daughter into the world and two weeks later we received a call confirming Violet's diagnosis of Cystic Fibrosis from her new born screening. We were quickly put in touch with the CF Team at Advocate Children's Hospital for guidance and support.

Since her diagnosis, Violet's routine has looked like this:

• Taking enzyme pills before all meals starting as a newborn
  
• Taking vitamins once a day
  
• Adding salt to bottles as a baby
  
• Supplementing bottles to increase calories and encourage weight gain
  
• Manual Chest percussion as a baby
  
• Eating salty foods & foods high in fat once solids were introduced
  
• Started using a vest for airway clearance at 26 months
  
• Routine Clinic Visits with Pulmonologist, Dietician, Respiratory Therapist, Social Worker, Child Psychologist & Pharmacist
  
• Started Orkambi medication (genetic modulator) after age 2
  
• Added in inhaled Albuterol (to open airways)& nebulizer treatment with Pulmozyme (to thin mucus) once a day before her vest treatments, starting just before age 3
  
• Started Trikafta medication shortly after her 3rd birthday
  
• Liver Function Blood Tests every 3 months for the first year on Orkambi & Trikafta
  
• Annual eye exams, checking for cataracts when on Orkambi & Trikafta
  
• Annual Chest X-Rays to monitor the progression of her disease
  
• Annual Blood tests checking vitamin levels
  
• Illness management- increasing airway clearance to 3-4 sessions a day (20 mins for each session) with any increases in cough or cold symptoms
  
• Will start doing Pulmonary Function Tests at her clinic visits this year
  

As thankful as we are for the wonderful treatments that are now available for Violet that many others had not been fortune enough to have in their lifetime, we can't just sit back and accept that this routine will be her life forever. We need to fight for a cure!