How to Travel with Kids Who Have Cystic Fibrosis and Other Long-Term Illnesses

Travel Mamas sometimes receives compensation and/or hosted travel and sample products related to blog posts. This story may include affiliate links for which we receive a small commission at no extra cost to consumers.

Does a diagnosis of Cystic Fibrosis or other long-term illness mean giving up travel? No way! My friend and neighbor, Jennifer Ferguson, is a mom, triathlete, and cure-seeker of Cystic Fibrosis. Both of her children, Ashton (age 10) and Lola (age 6) have this life-limiting illness that requires swallowing 35 pills daily, multiple sinus surgeries, feeding tubes to deliver extra calories, and at least one doctor visit per month. But they love to travel! Here's how to travel with kids who have Cystic Fibrosis and other long-term illnesses.

Cystic Fibrosis doesn't keep this family from traveling ~ How to Travel with Kids Who Have Cystic Fibrosis

Cystic Fibrosis doesn't keep this family from traveling

Jennifer says, “In the long term, my children’s lungs will slowly clog with mucus and after many lung infections, their lungs will fail and they will live an average of 37 years.” She is fighting for advances in living with CF to ensure her children outlive that statistic.

Ashton and Lola are in many ways typical kids. They ride their bikes to the park and swim in their backyard pool. Ashton loves video games. Lola wants a dog and welcomes kisses from our mutt, Penny, every time she comes to our house to play. Both kids like to ski, surf, and explore the world through travel.

Here's a Q&A with this CF-crusading mom to learn how she makes travel possible for her family.

How does Cystic Fibrosis affect your travels as a family?

Cystic Fibrosis never gives us a day off. Every single day my kids need at least an hour-long treatment and they must take pills with every single meal. We can’t skip a treatment because we have a busy travel day or because we want to get one more tourist site in. We travel with two large 17 lb rolling cases that carry their lung treatment machines as well as refrigerated medication and a lot of medicines that cannot freeze or overheat. 

There have been many times when a lung treatment needed to be done in the airport waiting area and that causes quite a spectacle. Many people stare but we also have many who are genuinely interested in CF after asking me a question about what the machines were doing to their lungs.

We always need to stay in a hotel that has at least a mini kitchen including a microwave and fridge. My son has a feeding tube and we have to bring a blender with us to mix the formula as well as the canned liquid nutrition he needs. Ashton also has to drink Ensure at most meals, so we either have to put that in our suitcase or purchase the Ensure at our destination. 

What packing tips do you have for parents who need to travel with a lot of equipment due to their children’s health issues?

Plan, plan, plan. List everything you use on a daily basis for your child whether it is oral medication, IV supplies, medical devices, syringes, specialized formula, nebulizers, etc. 

Know the baggage policies for the airline you are traveling on. Most airlines will not charge a baggage fee for luggage containing medical supplies and devices. 

Think about what you can purchase at your destination. If the equipment is easily damaged or expensive, try to carry it on with you or gate check it. 

What other travel tips do you have for parents traveling with children who have CF or another health issue?

Because my kids have CF, they can overheat easily and often don’t have the stamina to last a jam-packed day at an amusement park. Many parks (including LEGOLAND and Disney parks) have a guest assistance pass that allows guests with disabilities and other challenges to use either the “Fast Pass” line, enter via the exit, or use a special entrance that bypasses long lines. Many people feel a little guilty when using this pass since kids with CF don’t “look sick” or are not in a wheelchair. My philosophy is that there needs to be something good about having CF and the guest assistance pass is one of the few good things. 

Purchase discounted LEGOLAND California tickets now. Scroll down to learn more about saving money on your LEGOLAND California vacation with a special Travel Mamas discount!

Another helpful tip for traveling with children with health issues is to pack an extra day's worth of medication in your carry-on just in case you are stranded in an airport overnight. I also suggest knowing where the closest pharmacy is to your destination just in case you lose or run out of medicine. 

Where is your family’s favorite vacation spot?

My children love to go skiing in Colorado. Combining winter sports (skiing, sledding, building snowmen) and vacation is a great healthy way to spend our time. We do have to be more conscious of the higher altitudes as it can affect their breathing and hydration.

Does Cystic Fibrosis affect your destination choices?

CF definitely dictates our destination choices. Because of my children’s CF, they sweat a great deal and dehydrate easily. We do not go to destinations with temperatures over 85 degrees. CF also restricts that we must have electricity for their equipment, be able to sterilize nebulizers and keep medication cold so “roughing it” on a camping trip would be rather difficult.

What is your favorite family vacation memory?

My favorite recent vacation memory is skiing down the slopes of Big Bear with both of my children. It is such a wonderful feeling knowing that all the hard work of packing and planning pays off in many ways. Their smiles while speeding past mom on their skis is something that was hard earned.

Do you have any other advice for parents who might be nervous to travel with children who have Cystic Fibrosis or other health issues?

Make memories now. Don’t wait for your child to be sick to realize that you should have taken them on a fun trip. Do it now while they are healthy. Kids with health issues are especially in need of a break from their day to day regimen. Make plans for a vacation and don’t let the packing list prevent your family from making amazing memories.

How can readers help find a cure for Cystic Fibrosis?

A cure for CF and amazing treatments are in the pipeline right now. The Cystic Fibrosis Foundation is doing a tremendous job of raising awareness and funding to help my children. This foundation has an outstanding track record for spending the donations wisely. Ninety cents of every dollar raised goes directly to research that will help kids like Ashton and Lola.

The CF Foundation’s annual Great Strides Walk for a Cure is in May in many places around the country. Participants can raise money by asking friends and family to sponsor them. The CF Foundation makes online fundraising incredibly easy.

Last year, my family walked in the Great Strides Walk for a Cure with Jennifer, Ashton, and Lola and raised $455 to help find a cure for Cystic Fibrosis. This year, my goal is to raise $1000.

Will you help? Please DONATE NOW!

About Colleen Lanin, The Travel Mama

Colleen Lanin is the founder/editor-in-chief of TravelMamas.com. As the author of her book, "The Travel Mamas' Guide," she teaches parents not only how to survive a trip with children, but also how to love exploring the world with their offspring. Her stories have appeared online and in print for such outlets as the "Today" show, NBCNews.com, Parenting Magazine, Orlando Sentinel, Chicago Tribune, Expedia, San Diego Family Magazine, and more. Colleen gives tips on television, radio, and as a public speaker. She has a master’s degree in business administration with a background in marketing. She lives in Arizona with her husband and two kids.

Comments

  1. Life can be challenging, and my kids do not have CF. I have the utmost respect and admiration for CF families and particularly Jen and Matt’s family. Ashton and Lola are amazing kids with strong parents. Please donate to help them and others….

  2. Thanks for posting a link to this video. I am touched & inspired. My daughter is 18 months with CF & we are venturing into the traveling world this June – wish us luck! Thanks for your commitment to your friend & her family.

  3. Children are wonderful teachers. I admire the courage of your friend’s children. Traveling with the family can be an adventure in and of itself, let alone traveling with children who are ill. By the way … Most adults probably wouldn’t travel if they had CF or some other type of illness. It just goes to show you that if you put your mind to it, you can do anything. This includes traveling.

  4. Julie Robinson says:

    I Just Pray For All Of Them

Trackbacks

  1. […] friends travel as a family and deal with CF…she also makes a plea to raise money for charity – click here to read her story.   Mystery Lyric:  Do you know what’s worth fighting for?  When it’s not worth […]

  2. […] friends deal with each day for their two children.  Click here to read my post and click here to read my wife’s post.   Mystery Lyric:  I remember when a we used to sit, In a government yard in Trenchtown — […]

  3. […] #382 (soon to be published).   |   Click here to read my Cystic Fibrosis post and click here to read my wife’s post and charitable contribution request.   Mystery Lyric:  My room looks out to the wide open spaces, My heart is touched by awakening […]

  4. […] love me no more…LOL! J   |   Click here to read my Cystic Fibrosis post and click here to read my wife’s post and charitable contribution request.   Mystery Lyric:  You don’t have to be beautiful to turn me on — I just need your […]

  5. […] guess I am a wimp.   |   Click here to read my Cystic Fibrosis post and click here to read my wife’s post and charitable contribution request.   Mystery Lyric:  Little darling, It’s been a long cold lonely winter — Little […]

  6. […] root for Tiger, I insist.   |   Click here to read my Cystic Fibrosis post and click here to read my wife’s post and charitable contribution request.   Mystery Lyric:  She’s Walking down the street, Blind to every eye she meets — Do […]

  7. […] My Schedule…and a Little Extra:   We already gave and we already helped to raise money for research, but there is something deeply gratifying about going to the event itself with hundreds of others and simply walking along the beach for a cause you believe in.  On Sunday my family participated in the Cystic Fibrosis Great Strides Walk.  Our good friends and neighbors have two spirited kids with Cystic Fibrosis (shown in the picture to the left).  The Walk is hopeful and sad at the same time.  A few participate in remembrance of their children who lost the battle…evidenced by a sign they hold up as they walk.  And many are there with children who are presently soldiers in the battle, like our courageous neighbor friends.  And some are there in support of friends, like us, in the hopes that someday a cure will be discovered.  If you care to donate, even $5, I would be ever so grateful.  In the picture, my wife with daughter in front of her, me and my son on my shoulders, and our two neighbor friends mentioned above. To read a previous story by my wife, The Travel Mama, click here. […]

Speak Your Mind

*