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 two 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 was in a clinical trial this year for a modulator called Orkambi. He experienced some side effects and we ended up stopping the trial. Now that he is 2 years old, he is eligble for Orkambi without having to go through the trial. Cameron has restarted the medication and we are hopeful for no side effects!
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.”
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ATTENDANCE POLICY:
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:
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.