Karen Geissler, mother of two, shares her unique experiences with Commitment.
Born three months premature in October 1989, Travis Geissler spent the first 65 days of his life in the NICU at Johns Hopkins in Baltimore. Doctors believed his premature birth was the reason he wasn’t growing. His parents Karen and Cory pushed to get Travis tested for cystic fibrosis. At age two, Travis was diagnosed with CF.
Recently, Karen spoke openly with Commitment about the despair that followed her son’s diagnosis and how—15 years later—her family’s anguish has been transformed into great hope and optimism for the future. A third grade teacher, Karen lives by the “can do” motto. Today her family of four, including Cory and their children Travis and Larissa, live in Ellicott City, Md., and have raised more than $250,000 to fund vital CF research.
When did you become suspicious that Travis might have CF?
Travis was two years old and not gaining weight. Our daycare mom also said to us, “These stools just aren’t right. They’re very smelly.” My husband thought we had to do more research. I thought, “He’s just not eating enough. Let me really start feeding him.” So I began feeding him a lot of food…all kinds…I was doing a trip to McDonald’s each day.
After that, I remember going to the doctor’s with Trav. We changed his diaper when we got there. The doctor saw it and said, “Something is really wrong here.” He weighed Travis. Travis had actually lost weight. That was a knife in my chest. I was just so positive that he would gain weight.
Why did you have Travis tested for CF?
The doctor was convinced he had celiac disease, but I was not. I really thought it was CF. Cory and I were very vocal about it. Finally, he wrote a prescription for the test.
I worried about the results nonstop. If it were celiac, it was an allergy to gluten. At that time, if it were CF, then it was thought to be a death sentence. I remember thinking, “If it’s celiac, he won’t be able to eat his wedding cake. If it’s cystic fibrosis, he won’t have a wedding.”
How did you take the news that he had CF?
When the doctor told me Travis had cystic fibrosis, my husband grabbed the phone because I just freaked out. He rolled on top of me because I was thrashing so hard. It was unbelievable. That was not the diagnosis I wanted.
What did you do following the diagnosis?
We went to the library. I felt like I needed to go to the oldest books first. I read books published in the 70s and even the late 60s. They were saying, “Love your child. Don’t treat him any differently, but expect he’ll be dead by age 12.”
I remember being curled up in the fetal position, lying on the kitchen floor just sobbing. Cory, at the same time, was on the phone with a Foundation he’d discovered—the CF Foundation. They told us the average life expectancy was 21. I remember Cory getting off the phone and saying, “We will be okay.” It was the first time I felt hope.
He is a healthy boy. He has so much to live for. He is strong and kind and just plain wonderful. I’m so happy to be his mom."
mother of Travis
How is Travis’s health today?
Great. He’s had a feeding tube for nine years. He’s in the 50th percentile for height and weight and has normal lung function.
This past summer, he was a lifeguard. Isn’t that cool? This wasn’t a gift to him. He was fully certified by the Red Cross. He had to dive through a deep well, rescue bricks, the whole nine yards. He also plays on two ice hockey teams and a roller hockey team. In February, he’s going to receive his Eagle Scout award.
What are the biggest challenges that you both face now?
It’s the daily grind, the therapies, wearing the vest. It’s going through the different nebulized therapies that he has to do. It’s a big commitment. We’re trying to convince him that the treatments are keeping him healthy. He thinks he’d be healthy regardless of whether he takes his TOBI® or antibiotics. He doesn’t always see the connection.
Do you have to make sure that Travis does his therapies every day?
It is there on his chore list everyday: Do your breathing treatment. Usually he does. There’s a lot of nagging with that. [laughs] It’s not fun to be tough, but it shows our love, and Travis is doing well.
Does Travis have to maintain a special diet?
High fat, high sodium. He has a diet that almost everyone would be ecstatic to have.
In your own words, what do you hope the Foundation can accomplish?
I hope the Foundation will be put out of business! [laughs] I want life expectancy for all people with CF to be the normal life expectancy for anybody. I want our child to live to be 80. I want to become a grandmother so desperately. I see that happening through the work of the Foundation, and I am so grateful.
How have the new therapies helped him?
At 17 years old, he has more than 90 percent lung function because of treatments like TOBI®. That would have been unheard of 18 years ago. When Travis was diagnosed, he was about 18 years away from the average life expectancy. Fifteen years later, he is still 18 years away from the average life expectancy. I believe so firmly that the money we’re raising is making a huge difference, not just for Travis, but for every single person living with this disease.
When you look at your son today, what goes through your mind?
CF is not defining him. He is a healthy boy. He has so much to live for. He is strong and kind and just plain wonderful. I’m so happy to be his mom.
What advice would you give a mother who just found out that her child was diagnosed with CF?
We’ve had three different people who have joined our little walk group who have found out that their baby has CF. I say the same thing to each one of them: “This disease will be cured. We’re going to be connected in each other’s lives, probably for the rest of our lives. We’re going to watch our children grow up as healthy people and reach their full potential because of the work that we’re doing and because of the work that the Foundation is doing. We’re going to be okay.”