My daughter was diagnosed with cystic fibrosis at the age of two. She is now twenty three and I am thankful for every day that I have her in my life. She leads a very full life. She graduated from Boston College last year and now works a very full and demanding job as an economic consultant with Charles River Associates in Washington.
Cystic Fibrosis Explained
Cystic fibrosis is a serious genetic condition that causes severe damage to the respiratory and digestive systems. This damage often results from the build up of thick sticky mucus in the lungs, pancrease, liver and intestines.
Cystic fibrosis affects the cells that produce perspiration, mucus and digestive enzymes. Normally these secreted fluids are thin and smooth like olive oil. They lubricate various organs and tissues, preventing them from getting too dry or infected. In people with cystic fibrosis, however, a faulty gene causes the fluids to become thick and sticky. Instead of acting as a lubricant, the fluids clog the ducts, tubes, and passageways in the body. This can lead to life-threatening problems, including ifections, respiratory failure and malnutrition. The average life span of someone with cystic fibrosis is now about 40 years, up significantly from the two years back in the 1960's.
What My Daughter Is Doing Now
When my daughter was in school I did not share the fact that she had cystic fibrosis with many people. I didn't want to be that noble parent with the sick child and I didn't want her to be that sick child whom people regarded with limiting concern or sympathy. I did not want her to rely on her medical condition as an excuse for not trying.
She has lived a very active life. In high school she played field hockey and ice hockey. She is adventurous and kind, sweet and smart. She went off to college fairly far from home and then came home after graduation to live with a wonderful classmate from elementary school through high school in a fantastic apartment in Logan Circle in DC.
Then this winter while my dog was in the intensive care unit with acute pancreatitis, Lise Courtney called me to say that Hopkins had called her to say that she had cultured B. Cepacia in her lungs at a recent check up and that she had to go into the hospital the next day.
This was her first hospitalization. It seemed like such a defeat because I really had felt that we had been able to keep the germs at bay and that maybe it would always be so. When she had to be hospitalized, I felt like the Maginot line had been breached - and I realized that her health defenses were no more real than the Maginot line. Her hospitalization was a real eye opener for me. She really does have cystic fibrosis (not that I ever doubted it).
Fortunately she was only in the hospital for about a week. She came home with a pic line in her arm for another two weeks so that she could continue to receive massive antiobiotic infusions. Once she got the pic line out, she had a six inch long blood clot in her arm. It was not a good month. She has been able to return to work full time. She works out daily at Orange Theory. She has a mentor, Stacy, who is another young woman with cystic fibrosis who lives in California and they take the same exercise class together on different sides of the coast. People with cystic fibrosis can't be physically close to each other because of the fear of cross infection, so Lise Courtney generally only gets to talk to Stacy on the phone.
Lise Courtney is also active now with the DC Chapter of the Cystic Fibrosis Foundation. We participated in a fund raising walk in Bethesda in May and will participate in one on the mall in June. She is raising money for the Foundation to participate in a 70 mile hike in California near Mammoth Lake. She is very excited that Stacy will also be on this hike, separated by volumes of fresh air!
Tomorrow night, my daughter is being honored by the DC Chapter of the CF Foundation as a young adult member of the Washington Finest. This collection of young professionals is going to receive training for 16 weeks to perfect their fundraising skills. She is the only member of the group with cystic fibrosis.
Why Am I Sharing This?
Good question. I am sharing my daughter's story because the famed sports writer Frank Deford died today and he was the father of a daughter, Alex, who died from CF when she was 8 years old. Frank Deford was the president of the Cystic Fibrosis Foundation for sixteen years and brought a lot of exposure to CF with his book about his daughter and her death from CF. I know how lucky I am that my daughter has had the benefit of so much research funded by the Cystic Fibrosis Foundation.
I also am writing about my daughter because I need to be more open about her medical condition so that she feels comfortable talking about the challenges she is facing each day. We need to acknowledge her medical condition to her and support her as she deals with her treatments and medications. I also need to learn how to ask for contributions to the Cystic Fibrosis Foundation to support the incredibly important work that they do.
My take away from this is that many people face challenges in their lives and most don't share those challenges with others. This makes it even harder to get through the day.... so if you know someone is facing a challenge or their child is suffering from some illness or condition, ask about them. Let your friends know that they are free to vent or lean on you. If they are fundraising, give a few dollars - five dollars is a powerful message of support to someone who feels like they are going it alone. And if you can't give a few dollars - but sure to give a hug.
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