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HomeBlogFranklySteinWhat it’s like to have a teenager with cystic fibrosis — FranklyStein

What it’s like to have a teenager with cystic fibrosis — FranklyStein

KathThereseWCan you imagine what it would be like to know that in all likelihood, you would outlive your teenager?

That’s the case in a story we posted this month on a teen living with cystic fibrosis. Austin Gordon has CF and unless a cure is found, his life expectancy is about age 37. Read the story of how the teen and his family live as normal a life as possible.

A good friend of mine has a 16-year-old daughter with cystic fibrosis so I’m well aware of the toll it can take on a family.

While Therese struggles with this chronic lung disease, she has the most amazing heart of anyone I know. In the midst of daily struggles that include breathing treatments, therapy, medications and now needles to combat diabetes, she never stops thinking of others. The stories her mom tells melt my heart.

“She is just so grateful all the time,” her mom, Kathy, explains. “She loves being her even thought it’s definitely not easy.”

Therese organized a community club in her neighborhood and plans charitable deeds. She and her friends rake leaves to raise funds for various causes, they help elderly neighbors and even baked cupcakes for the local fire fighters.

“She’s always asking what we can do next,” Kathy says. “I feel guilty because I’m sometimes thinking ‘give me a break!'”

Kathy, however, is truly a saint and the best mom I know. Therese is her fourth of five kids, and Kathy works tirelessly to meet all of her kids’ needs and keep Therese in the best health possible. That often means waking up every three hours to administer medicine or do therapy. She spends days and nights with Therese in the hospital, often having to fight with doctors who don’t always listen. It’s often exhausting and sometimes very bleak, but Kathy perseveres. It’s only on very rare occasions that I’ve seen her downhearted. She’s the first to tell a joke and to make you laugh and is always quick to ask how you are doing.

Helping Therese, however, is easy, Kathy says, because she never takes anything for granted.

“Even when she’s about to be wheeled into the operating room for a bronchoscopy — something she totally hates — she will look at me and wink and smile,” the mom explains. “She’s an amazing kid.”

Whenever I start to feel that my life is overwhelming, when my kids are making me crazy, or work is piling up, I stop and think about Kathy. She balances her life so well. She rarely complains. She’s a true inspiration.

This spring Therese has really been struggling. A persistent bacterium has taken up residence in her lungs and is making it very hard for her to breath. The antibiotics are bringing on diabetes and she hates needles. Her spirits are waning and her mother is struggling over how hard to push.

Living with CF is no picnic. But there is a way for you and I to help.

Great Strides Walks are held all over the country to raise funds for CF research and there are two in the area coming up — one at the Navy-Marine Corps Memorial Stadium in Annapolis this Friday, June 6, and one in Centennial Park in Ellicott City on Saturday, June 7. You can join Austin’s team (Team Feets) at the Annapolis walk or Team Therese at the Ellicott City walk. For details, visit the Great Strides website. Make a donation and take the whole family for a day of fun for a great cause.

To read more FranklyStein click here

BreakFAmFranklyStein is a blog by Chesapeake Family Magazine editor Betsy Stein who lives in Catonsville with her husband, Chris, and four children, Maggie, 14, Lilly, 13, Adam, 13, and Jonah, 9.


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