The Pelican Family
As we write to you, we can imagine that the past year we reflect upon has been difficult for most of us. Our lives have been touched by Covid-19 - vacations and family reunions cancelled due to the fear of spreading the virus. Many of us have worried about catching the virus, just as CF families have worried about catching germs for a lifetime. Although the pandemic forced us to simplify life and enjoy the most simple of pleasures, we miss seeing and hugging our families-our grandchildren, we miss work friends, we miss travel, many of us miss income and most of all-we miss normalcy. We share your sorrow; we understand your anxiety and we send well wishes to all that there will soon be an effective vaccine to allay the fears of a further Covid-19 spread.
That said, the pandemic has placed heightened restrictions on our families living with cystic fibrosis-the disease that puts a patient’s lungs at great risk for the ravages of Covid-19. Although most CF patients who have contracted COVID have done well, our doctors have told us we can not let our guard down. We can not be indoors with or hug our girls, Sam and Libby, or their families, until there is a vaccine. We can not prepare food for them and cannot be together unless we are masked and at least 6 feet apart. Given the doctors’ mask mandate, we have not seen the smiles on our families faces since March-unless we are 12 feet apart.
In the fall of 2019, with the advent of Trikafta, Sam and Libby were celebrating significant lung improvement and newfound stability. The drug that had changed their lives in the fall of 2019, Trikafta, was still not a cure though. The risks of Covid-19 were no less daunting, yet the protection it provided did create some peace of mind, for which we are incredibly thankful.
Funding the science today is more important than ever as 10% of the CF population still awaits a treatment for their genetic mutation. Average life expectancy for a CF patient is still in the mid-forties. No CF patient is relieved of the hours a day of pounding chest therapies, pills costing hundreds of thousands of dollars annually, numerous hospital visits, fear of decline…or the all-consuming threat of Covid-19.
The Cystic Fibrosis Foundation’s motto is: “Until It’s Done.” We will not rest until a cure for CF is found. We dream of the day when CF will stand for “Cure Found”. We are so close-please do not leave us behind now.
Please consider making a gift today to help us continue the work toward finding a cure for CF. We are grateful to you for any gift amount.
Steve and Debi Pelican