Hello Friends and Family!
It's 2021! Dean will turn 10 June 1st and June 5th we will celebrate out 10th Great Strides event!! 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 just over 90% of the CF population. Unfortunately, Dean does not qualify for these, but the science is there and new research occurs every day. We will not stop until it's done and all those living with CF have a drug to treat the cause of CF. To make that happen, we will continue to fundraise, ask for support, attend events, and advocate with our legislators. Team Dean-O-Mite has raised $82,976 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. We will be doing a nasal scraping study this year to see if any of the new treatments will help Dean. He asked to be part of this! 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 definitely one of a kind. He loves to read, learning about history, playing board games, and being crazy in our new backyard. He even asked Santa for a shovel this year so he can dig holes! He is great big brother and cares deeply for all those he loves.
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