April, 2023
Dear Family and Friends,
As most of you know, since my son Gus’s diagnosis with cystic fibrosis at the age of three, my family and I have been committed in our pursuit to help find a cure for this dreadful, progressive inherited disease which robs people of their lung function and wreaks havoc on many internal organs.
When Gus was first diagnosed, the average life expectancy for someone with CF was 30. We never talked about his future; we just took one day and week at a time (a simple cold could have meant disaster). He – we – didn’t really dare to dream.
How far things have come in just over two decades. Now, with the advent of miraculous drugs like Trikafta and great advancements in treatments, Gus can begin to envision his own dreams and set goals for himself….but this is not without its challenges.
In a recent New York Times article, “What It’s Like to Learn You’re Going to Live Longer Than You Expected,” the author shared the difficulties many people with CF now face: “Internalizing the prognosis they had at birth, (those with CF) never invested in adulthood, and yet here they are, adults, with years in front of them. None of this is simple for patients who have lived their lives under the shadow of an early death.”
“It’s a tremendous blessing for most patients, but it can also be a source of anxiety,” noted a CF specialist at Boston Children’s Hospital and Brigham and Women’s Hospital. “You had this thought of how your life would play out. It’s what you prepared for. But now you’re going to live a lot longer. It can be a lot to go through, a lot to process. What are you going to do with that time?”
As much as Gus has physically improved since he began taking Trikafta for his lung function (his litany of enzymes for his digestive system continues), he has endured the psychological duress described by the CF physician in the NYT article. We are delighted for him that, after a few false starts, he recently passed his national EMT exam and will begin a full-time job soon. He has also enjoyed assisting at a special-needs school in recent months, working with two autistic teens. However, he has struggled with reconciling his new reality with the dire expectations that burdened him for the first 21 years of his life. I pray that he will continue to enjoy good health, both physically and mentally, and will learn to fully embrace the new outlook on life he can now anticipate.
Saturday, May 20, will be the 21st time my family and I will walk in Great Strides in support of Gus and all those with cystic fibrosis. Thanks to your longtime generosity and that of many people, and the relentless dedication of the Cystic Fibrosis Foundation, the future for people with CF has never looked brighter. Incredibly, the average life expectancy is now 50 years – unimaginable just 24 years ago when Gus was born! But many with CF are not as fortunate; we still lose too many people each year to the ravages of CF. There is still no cure.
If you can, please contribute to our Great Strides effort this year. You may donate to my personal page, or you may send a check, made payable to “CF Foundation,” to my sister, Kathy Stark, at 5 Bartlett Road, Middletown, RI 02842. Nearly 100% of your donation will go directly to fund critical, ongoing CF research and patient programs.
I offer my tremendous gratitude to you, my family and friends, for your unflagging support, year after year, in this cause that means so much to my family and me.
With continued hope for Gus’s future and for all who battle CF,
Tom Giblin and Gus’s Gang
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.