Please donate to my granddaughter’s swim in support of the Cystic Fibrosis Foundation
It’s hard to describe the pain of watching a child you love challenged by a chronic illness. When I learned my 2 ½ -year-old granddaughter had Cystic Fibrosis almost eight years ago, I felt like I had been punched in the gut. My grandchild was not supposed to struggle with a serious condition. That’s not the natural order of things.
My granddaughter started swimming as a way to keep her lungs strong and is now on a competitive swimming team. This year, she swam a mile rather than striding on May 21 (she has a swim meet that day). That's 70 laps, 24 minutes of continuous swimming – quite an achievement for any ten-year-old, let alone a child with CF. She dedicated her swim to raising money to support Great Strides fundraising efforts, and help the Cystic Fibrosis Foundation forward its mission to find a cure for all people with cystic fibrosis.
Like all children with CF, my granddaughter has taught me so much about bravery in the face of adversity. She’s such a plucky little girl who has won many swimming ribbons and trophies. But the one I am most proud of is the coach’s award for her swim team for showing the best effort, improvement, and character. She endures blood draws and throat cultures every few months. She is good-natured about doing her daily vest and nebulizer treatments (to loosen secretions). She takes her meds, including enzymes every time she eats, like a pro. Thankfully, she is strong and healthy, but she is also a young girl with living with CF.
How did she get CF? It’s a genetic disease that needs a recessive CF gene from each parent. Neither of her parents had any idea they were carriers. The one my daughter passed on to her daughter came from me. I found that after the fact. Perhaps many generations ago, a baby somewhere in Lithuania died from CF. Who knows? Lots of babies died back then. But in what we know from our family tree, CF did not exist. My granddaughter was just unlucky, I guess.
Part of what I do is advocate for a variety of causes, and I can’t think of a more worthy one than the Cystic Fibrosis Foundation (CFF). The foundation has helped my granddaughter in so many ways. It funded the research that produced Kalydeco, the medication she now takes. It helped her to obtain this drug, paid for new airway clearance vests and nebulizers, and even went to bat for her with insurance companies to ensure she received the best care. Because of the Foundation, people with CF like my granddaughter are living longer and healthier lives.
Now more than ever, with the repeal of the Affordable Care Act (Obamacare) and its replacement being at the top of President Trump’s agenda, we need to step up to the plate to support worthy causes that will be adversely impacted. The American Health Care Act (AHCA), and the proposed changes to get it through Congress, will make life much harder for folks living with CF. Allowing states to loosen protections for people with pre-existing conditions will put people with CF at risk. Proposed changes to Medicaid's funding structure will reduce access to care and treatments. It will be even harder to find insurance that meets the needs of people with CF.
Great Strides, the largest national CF fundraising event, is coming up this month on May 21. The Cystic Fibrosis Foundation is an awesome organization that raises and invests hundreds of millions of dollars to support the development of new CF drugs and therapies. Research is helping to develop other promising new drugs, and almost all money donated to the Cystic Fibrosis Foundation goes directly to fund this research.
Please consider making a donation in honor of my granddaughter’s swim and help add tomorrows to the lives of those living with Cystic Fibrosis.
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