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 three years we have watched Cameron grow into the happiest and most curious toddler. He loves to swim, ride his bike and play with trucks! We have also seen how truly tough and brave he is.
Many ask how Cameron's health is and we are thankful to say that he is currently doing well and is healthy. What goes into keeping him healthy are a tremendous amount of medications, treatments, doctors visits and tests. Cameron currently takes about 35 digestive enzymes a day. He has chest physiotherapy performed twice daily (or more if he is sick). 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 and then another nebulized medication. The less mucus in his lungs means less germs who call his lungs home. He takes an antacid to help his enzymes breakdown in the correct spot in his digestive tract. Since Cameron's body cannot absorb fat on its own, that also means he is not absorbing fat soluble vitamins. He takes these vitamins supplementally in a form his body is able to absorb.
Cameron is now old enough to take a modulator called Orkambi. This is the only medication that he is currently eligible for that helps to correct his CF on a cellular level. Orkambi helps to increase lung function and reduce pulmonary exacerbations. This drug 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.”