We have two beautiful, inspiring, feisty daughters.
Jolene lost her life December 17, 2017 to complications from CF. Although our hearts are broken, she continues to inspire us each day to not take one breath for granted.
Cecilia is 6 years old. She enjoys circus class, riding her bike, climbing, swimming, painting, playing with her doggie, using sharpies, and exploring limits.
Both our daughters have been diagnosed with Cystic Fibrosis, a chronic disease that leads to life-threatening lung infections, poor absorption of nutrients from food, nasal polyps and other sinus issues, among other nasty things.It is an unwelcome but permanent guest in every minute of our lives.
Like any parent, we love our daughters with astonishing power. Our hearts ache with the beautiful pain of loving so fully, as we watch them grow up and become beautiful young girls. We are filled with wonder and joy as we watch them change, grow, and experience life. There are times when I feel as though I might literally explode with love and gratitude that my days overlap with theirs.
We are just like your family. We lose our tempers. We hurt each other's feelings. We get stressed out. We struggle with balancing time. We face the financial strains of any family and struggle with balancing our priorities just like you.
But, because we must also face the reality of our children having a predicted life expectancy in the mid thirties (a fact, quite frankly, I am very tired of typing in these letters) every lovely milestone and birthday is also a sad reminder of the relentless march of time.
Every financial discussion involves considering hundreds to thousands of dollars in co-pays, prescriptions, and hospital bills.
Every talk of work/life balance involves the knowledge that we must be ready to drop everything to keep our children home due to illness. We must be prepared for a two week hospital stay.
Watching our children takes their first steps, write their letters or ride away laughing on a two wheeler, is also a blow to our hearts and a not so gentle reminder of the speed of time and our lack of control over it.
At times, we are so grateful for the gifts of the disease: we are always reminded that life is so short and precious and that all we have is this very moment right in front of us. Other times, helplessly watching at our children suffer in pain or frustration because of this disease is unbearable. It makes us deeply angry at the injustice and deeply sad with the possibility of losing our children. Because we REFUSE to lose our children.
Cystic Fibrosis is a member of our family. It wakes up with us, goes to school and work with us. It is at every meal, every birthday party, every moment of our life be it joyful or sad. We work hard as parents to lead our daughters through life as bravely as we can. But it's not easy.
We work hard to allow joy into our hearts and stay open to love.
There are drugs out there RIGHT NOW that are fixing the underlying defect in CF in some people and STOPPING their disease. Thanks to the generous donations of people like YOU, a cure is right around the corner. Our daughters are waiting for their drug. Our daughters are waiting for their cure.
The very real possibility of Cystic Fibrosis being something my daughters live with instead of die from gives me great hope. Let’s fight together to find a cure and add tomorrows for Jolene and Cecilia.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.