May is Cystic Fibrosis Month: Advocating for my Grandchild with CF

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 seven 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.

Trying out an Olympic swimming metal

Trying out an Olympic swimming metal

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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. Our family participates in the Great Strides CF fundraiser every May, and I am hoping you will donate to this lifesaving organization that has helped my granddaughter in so many ways.

The foundation provides so much support to folks living with CF. It funds research to develop new treatments. It helps patients to access life-saving medication and therapy. Most recently, it helped my daughter to advocate for better care for her child when her health insurance denied coverage.

My granddaughter is an amazing child who has taught me so much about bravery in the face of adversity. She’s such a plucky little girl who has become an awesome swimmer. She once again won the coach’s award for her swim team for showing the best effort, improvement, and character. She endures blood draws and throat cultures like a pro. She is so good-natured about doing her daily jiggle vest and nebulizer treatments (to loosen secretions) She takes her meds, including enzymes every time she eats, like a pro. Sometimes, it’s hard to remember 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 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.

Ironically, she is a lucky unlucky girl a way. Thanks to support from the Cystic Fibrosis Foundation, researchers at Vertex Pharmaceuticals developed a new medication that targets the root cause of the genetic mutation she inherited from her father. My granddaughter is among the 4% of people with CF helped by Kalydeco. She had been relatively healthy prior to being diagnosed. So far, she is thriving since she started taking Kalydeco almost four years ago.

She races to the finish line!

She races to the finish line!

The Great Strides Walk, the largest national CF fundraising event, is coming up on May 22, just one month from now . 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 support our team and help add tomorrows to the lives of those living with Cystic Fibrosis.

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