Ordinary Miracles: What the CFF has given our family
By Beth Barry
Several years ago, we approached Schlitterbahn with the idea of having a fundraiser for the Cystic Fibrosis Foundation and they graciously welcomed the idea! That was the beginning of many years of the Valero Great Strides Walk at Schlitterbahn! To date, we have raised well over $500,000 for more research and development of new and life-extending therapies for people with CF.
It has been almost 20 years since our daughter was diagnosed with cystic fibrosis. We have three kids, two of whom have CF. Over the years, we have worked together as a family to meet and overcome the obstacles that CF has brought into our lives, and those challenges have been many. Kaitlin and Ryan work hard each and every day to stay as healthy as possible until there is a cure. Their brother Cullen is a constant source of love and support. It has not always been easy, but we know that everyone has a battle to fight, and these battles are best fought together, with as much faith, love and hope as we can pull together!
When Kaitlin was first diagnosed, the average life expectancy for people with CF was 18. Of course, this was unacceptable to us, so we immediately looked for ways to get involved. With Schlitterbahn’s help, we are raising funds for new and better treatments until that amazing day when someone figures out a way to beat this disease with a cure!
Our family and friends have been an amazing source of love and support, too! They have done it all – from visiting us at the hospital to fundraising for more research. We can honestly say that our family and friends have shown us the light and love of Christ in this world! (And they all love an excuse to spend a day at Schlitterbahn each May!)
Several of these new medicines and treatments have helped people with CF to live fairly normal lives. Hypertonic saline, Pulmozyme, Tobi and Cayston represent watershed moments in the timeline of exciting new treatments for CF. These meds are in our frig right now, playing a huge role in keeping our kids healthy and active. Yes, our kids have several hours of treatments, lots of meds to take, countless medical tests, and many trips to the hospital, but thanks to the fundraising we do with Schlitterbahn, they have stayed healthy enough to go to school, perform with the school band, play on their school’s soccer team, and much more. To see them enjoy these activities with their friends means everything. For us, these ordinary activities are nothing short of miraculous.
Because there is no cure, many people have had their lives cut short by CF. Until a cure is found, we strive to honor these people by being mindful of how precious life really is.
What does it mean when your child has cystic fibrosis? It means that you better double-down on your faith and be ready to work. It means that there’s trouble ahead, but it also means there are blessings at every turn. It means you will learn to treasure each and every day, even the crummy ones. It means that each milestone they reach – when they learn to read, when they are confirmed in their faith, when they get their driver’s license, and when they go off to college – all of these are incredible gifts!
We will continue to stand firm in our faith and keep working until there’s a cure. We are forever grateful to the CF Foundation for giving us the opportunity to help our kids, and all people with CF, to live longer and healthier lives, and we are profoundly grateful to Schlitterbahn for standing with us and giving us so many reasons to live with hope.