Hello family and friends,
Get ready for the Cystic Fibrosis’s 2019 Great Strides Fundraising walk at Lake Calhoun on Saturday, May 4th at 9:00 am. We would love to have you be part of Henry’s Heroes this year! You can simply sign up for the walk by clicking the link on this page, and meet on the WEST SIDE of Lake Bde Maka Ska (Lake Calhoun). We will wear black t-shirts with neon green again.
Henry's year has been much better than last. He started a new medication called Symdeko. (The developement of this drug was funded by the Cystic Fibrosis Foundation and your amazing fundraising!). This new combination of medicines helps Henry's body transfer more chloride through his cells (the underlying defect in a CF cell is the inability to transfer salt). This should help Henry clear out his lungs better over time, and Henry's lung function numbers have gone back up to his baseline. This is great news and keeps him out of the hospital!
We've heard about another combination of drugs that is in clinical trials, and this new treatment is showing even more lung function improvement for those trying it out. We've even heard numbers as high as a 13% increase. This would mean Henry could go from using about 85% of his lung capacity to nearly 100%. Can you imagine how much more energy, focus, and (most importantly to Henry) how much better he could compete at basketball and baseball! It's very exciting stuff.
We've also learned that there is a real mental health component to fighting a chronic, terminal disease every day of your life. Henry has struggled this year, and I think he is fighting to come to terms with what it means to have CF, how to deal with all of his health worries, and how to deal with feeling different from everyone else (and "different" is the last thing you want to be in middle school!). He's a fighter, and I'm proud of him.
We continue to be excited and hopeful about all the research being done to find a cure for CF. In the meantime, Henry fights to be as healthy as he can be!
Please consider making a donation!