Vincent was diagnosed with Cystic Fibrosis at 2 weeks old. Even though he's not even two, he's become very familiar with his daily CF routine. He takes multiple pills every meal to help aid digestion - taking over 200 pills a week. He does several breathing treatments a day to help thin the mucus in his body and fight infections. These take about 2 hours a day. And we manually did chest therapy on him until he was 1. Now he does the shaky vest a few times a day. Every month we visit Lurie Children's Hospital to meet with his team: his pulmonologist, repiratory therapist, dietician, physical therapist, and more. These visits last upwards of 3 hours, but we are lucky to have such a specialized team with dedicated support.
The CF Foundation continues to explore the most promising science to help all of those living with CF. More than 10 therapies have been approved, which have helped add decades to the lives of people with the disease. While we now have life-changing medical treatments for many people with CF, some people with CF do not respond to these medications. In Vincent’s case, he is not yet old enough to access them.
While researchers have made great strides over the years, there is still NO CURE and more research is needed. Beyond a cure, the CF Foundation is doing all it can to help patients and families gain access to the best care, as well as navigate insurance, financial, mental health and legal services.
Our family had chosen to participate in our local Great Strides walk benefitting the Cystic Fibrosis Foundation, but unfortunately it was cancelled due to the coronavirus. We are instead challenging ourselves to walk virtually and hope to do our part to fill the fundraising gap the CFF has experienced this year. Your gift is 100-percent tax deductible, and a lot of companies will also do matching donations!
Follow our journey on Instagram: @vincentvgge