Here we are again - our 15th year of fundraising for the CF Foundation!
Over the past few years, significant progress has been made in the way of improved treatments for CF and even potential cures. But, as of today Kyra still has CF and there is no cure for CF!
Kyra's pulmonologist describes CF as a marathon rather than a sprint, and as Kyra gets older, we could not agree more. Like running a marathon, for most of the 26.2 miles Kyra can hold a steady pace on the flat course - taking pills, doing her vest treatments, staying healthy, but then there are the hills and the struggles such as surgeries and missing a lot of school. But, Kyra is a tough kid with a great attitude and sense of humor so we believe that she will continue to run this marathon into her 90's or even 100!
Kyra continues to take about 25 pills/day, and she is continuing to manage the many medications herself. Every Sunday she fills her weekly pill box, and does a great job of remembering to take them. Since the last walk, Kyra has become less compliant with her vest treatments, but with exercise (mainly basketball) she has been able to keep her lung function up and generally, stay quite healthy. Mark & I are allowing her to be independant and make decisions for herself - it's hard for us, but our CF care team is aligned and we will just continue to watch for any downturn in her health. If/when that happens we will need to step in!
Our family’s fundraising goal again this year is $10,000, and our goal for Kyra’s Klan is $25,000! Your contribution can really make a difference in Kyra's life and the lives of everyone with CF. CF is a rare disease, which means that donations can be hard to come by – and every donation really matters. Please join us on Saturday, May 4th at Lake Calhoun for a fun morning celebrating the progress of the CFF and our amazing kid, Kyra!
We would love your support!
Thanks, Kyra & Family