Daniel and I are parents to our sweet boy, Cameron. He was diagnosed with cystic fibrosis when he was 2 weeks old. We will never forget how our world stopped when we received the phone call. However, as parents, we are his foundation. We picked ourselves up and accepted our new path. CF will be in our daily lives but it will never define Cameron.
The past four years we have watched Cameron grow into the happiest and most curious toddler. He loves to swim, ride his bike, play sports, and his love for trucks continues! We have also seen how truly tough and brave he is.
Cameron went under this year for his first surgery and second hospital admission. Because of CF, Cameron has developed significant sinus disease. Surgery helped to relieve his symptoms and IV antibiotics after kicked out all the residual germs from his sinuses.
Many ask how Cameron's health is and we are thankful to say that he is currently doing well. What goes into keeping him healthy are a tremendous amount of medications, treatments, doctors visits and tests. Cameron currently takes about 20 digestive enzymes a day since his pancreas doesn’t work correctly to break down fat or protein. He also takes an antacid to help these enzymes work in the correct spot in his digestive tract. Since Cameron doesn’t absorb fat on its own, that also means he isn’t absorbing fat soluble vitamins— this includes vitamins like Vitamin K which helps with blood clotting. These vitamins are taken supplementally in a form his body can absorb. He has chest physiotherapy performed twice daily (upped to 3-4 times a day if he’s sick or admitted to the hospital). That is started with albuterol, followed with hypertonic saline in a nebulizer, and then 20 minutes of his special vest to shake any mucus from his lungs (or “shakes as we call it). In the afternoon we add in an additional nebulized medication to reduce mucus even more. The less mucus in his lungs means less germs to call his lungs home.
Huge update for this year: Cameron has started Trikafta!! Trikafta is a modulator to help correct CF at a cellular level. It is a miracle drug which we hope will continue to reduce pulmonary exacerbations, sinus issues, GI blockages and increase lung function! Trikafta was developed by Vertex Pharmaceuticals with significant clinical, scientific and financial support from the CFF. !!!AKA YOU!!!
We are so very hopeful for all that is coming down the pipeline. The Cystic Fibrosis Foundation is dedicated to find a cure for ALL those with CF. We are beyond thankful for The Foundation and all of their work to get us to that end goal.
We are continuing on this journey with Cameron and we hope to have you by our sides for the ride.
“The CF Foundation continues to lead the way in innovative research and drug development, promoting high-quality, individualized care, and helping people with CF live better today. Nearly every CF drug was made possible by the Foundation and because of funds raised from Great Strides, people with CF are living longer, healthier lives and pursuing their dreams.”