For my Grandchild Living with Cystic Fibrosis
#CFawareness
May is Cystic Fibrosis Awareness Month. You may not know about that but having a grandchild with CF makes the “merry month of May” a bit sobering for me.
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 nine 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.
She was diagnosed just after my youngest daughter had delivered her second baby. During the latter part of her pregnancy, she shared some concerns with her pediatrician about her daughter’s bowel movements, which seemed frequent and strange in color and consistency since she had been toilet trained. Tests revealed my granddaughter had CF. With a new baby in the house, our family had to move through the denial and anger stages of grief very quickly. There was so much to do and learn to adapt to her needs. A special vest had to be obtained and paid for by insurance to ensure she received proper treatment for her lungs, which were still relatively healthy. Same with an air purification system, a nebulizer for when she had colds (often for a child her age), enzymes to take before eating anything, a special diet to learn and implement. All of this on top of taking care of a newborn and returning to her job as a veterinarian.
In a state of profound depression (this stage lasted far too long), I read and studied everything I could about the disease, learning about her specific and rare mutations. 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 discovered 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. Her younger brothers do not have it.
Our family joined with the Cystic Fibrosis Foundation (CFF) to raise funds for research. Thanks to support from the CFF, scientists at Vertex Pharmaceuticals developed a new medication that targets the root cause of the genetic mutation my granddaughter inherited from her father. My daughter did an amazing job of advocating for her child, working with the head of the CF Clinic and battling her insurance company, and finally my granddaughter was approved for the medication. She is a lucky unlucky girl, as she is among the 4% of people with CF helped by Kalydeco.
Two years ago, the CFF went to bat for us again as my daughter struggled with a health insurance nightmare. She had to change insurance plans and needed Anthem Blue Cross Blue Shield of Indiana to agree to cover my granddaughter’s continuing care at Riley Children’s Hospital Cystic Fibrosis Center. This is the only treatment center for CF in the state. Yet a nurse reviewing the request at BCBS turned it down, stating that there was a random pulmonologist in her health insurance network who could provide “adequate” care. No way was this true.
All of my daughter’s attempts to get BCBS to communicate with a nurse at Riley to reverse this terrible decision failed. And then Aaron from CFF’s Compass came to our rescue. Compass is a part of the Foundation that helps patients with CF to navigate insurance, financial, legal and other issues.
Aaron was able to get BCBS to agree to cover my granddaughter’s care in 90-days intervals. I’m not sure why Anthem wanted to revisit this every 90 days, as sadly my granddaughter would not miraculously be cured of CF. How we wish that could happen. The fact that the CFF was able to keep my granddaughter with her care team was truly a gift.
My granddaughter is an amazing child who has taught me so much about bravery in the face of adversity. She’s a determined girl who has become an awesome swimmer. This year, she won the coach’s award for her swim team and made divisional cuts for the 13/14-year-old category at age 11. At the same time, she endures blood draws and throat cultures and is good-natured about doing her daily jiggle vest and nebulizer treatments. 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 lucky we are to have the amazing CFF in our corner. The Foundation has been there for us since my granddaughter was diagnosed nine years ago. If the health insurance industry is the evil empire, it’s reassuring to know there are some good guys to help my granddaughter receive the care she needs. The 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 CFF goes directly to fund this research.
On Mother’s Day, my granddaughter is swimming a mile and dedicating her swim to the Foundation’s Great Strides fundraising campaign. That’s 66 laps, 22 continuous minutes — amazing! If you would like to support my granddaughter’s swim and donate to the Foundation to support further research, use the link below. Your gift will make a difference for so many like my granddaughter living with Cystic Fibrosis.
I invite you to read my book Terribly Strange and Wonderfully Real, join my Facebook community, visit my website, and sign up for my newsletter.
Read Laurie’s blog posts on Midcentury Modern here.
#CFawareness
