Hello Friends and Family!
We don't know where the time goes, but in 2020 Dean will turn 9 and we will be raising funds for our 9th year of Great Strides Fundraising! Every day and every dollar we are getting closer to a cure. The Cystic Fibrosis Foundation has worked diligently to find and create four drugs which are currently available to treat the underlying CAUSE of CF in about half of the CF population. The newest and most exciting was approved in Oct of 2019 and now 90% of those living with CF have a drug to help them. Unfortunately, Dean does not qualify for these, but the science is there and new research occurs every day. We will get that last 10% and Dean will have a drug he can take to treat the cause of CF in his lifetime. To make that happen, we will continue to fundraise, ask for support, attend events, and advocate with our legislators. Dean-O-Mite has raised just under $75,000 since 2012 for Great Strides - we could not have done this without the help and generosity of our friends and family! THANK YOU!
As Dean is getting older, he is starting to become more aware of what CF means for him. In the fall of 2019 he was part of a special project for the CF Foundation on procedural anxiety. We've managed to stay out of the hospital since 2017 and hope that continues. His normal routine consists of treatments two times a day (more when he's fighting an infection) - this includes albuterol to open up his airways, hypertonic saline to wet down the mucus, and pulmozyme to cut up the mucus. These are done with his nebulizer while he wears his vest. Additionally, he takes about 20 or so enzymes a day when he eats any snacks or meals. Again, everything we do now for Dean in terms of medications and treatments is all to treat the symptoms of CF and the bugs he gets, nothing to treat the underlying cause.
Cystic Fibrosis does not stop Dean, and we are very thankful for that. Matt and I are beyond proud of how Dean handles CF and are hopeful that the routines we practice now will keep him healthy and be engrained in him when we hit those pesky teenage years. Dean is one of the happiest, kindest, and sweetest kids we know. He continues to love to read and learn about history and he has really gotten into playing board games this year. He is an amazing big brother, and truly is probably a little too nice to that crazy sister of his.
We know everyone has their own cause - and we know you cannot donate to everything. We appreciate all the support and love we receive, we cannot begin to thank everyone enough. Please consider supporting and helping us find a cure for Deaner and the other 700+ Indiana CFers!
Matt, Rachael, Dean, and Renley