site logo

Meet a Child with CF

Insights about Rosie

GEMSS would like to thank Rosie and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

 

Rosie is a strong willed, very determined, and independent fourteen year old who has a diagnosis of Cystic Fibrosis. She is a ‘typical teenager’ and a ‘tough character’ according to her mother Paula. Rosie is doing well in high school, academically, athletically, and socially. She ‘knows what she wants’ and is taking good care of her medical needs and challenges, balancing her health and school life well.

As an avid athlete, Rosie can be found playing field hockey or on the track team working very hard! Because CF causes her to sweat more, she has to take great care to hydrate, especially on warm days because her brain doesn’t process the feeling of thirst typically.  The demands of a travel team, night games and events, and the temperature changes all create challenges for her to manage her food and fluid intake carefully. Eating well, not fast foods, creates better outcomes for her. And staying well-hydrated is so important, especially during athletic events.

Her mother feels that Rosie learned a great deal from listening to an adult woman who also experiences CF when Rosie was thirteen years old. It was like a light bulb went off, and this woman had a profound effect on Rosie in that she began to realize she could take control her own destiny.

School has been very supportive of Rosie and, although she is the only student who has CF in the system, they will do whatever needs to be done for her. When she was younger, she knew the nurses ‘very well’ according to Paula. “If I had it to do over” she warns, “I would have kept her out of the nurse’s office more, as they can be great places for germs.”

Her issues are mainly digestive and if she is not feeling well, she will often text her mom and they will figure out how to manage the issue. For example, if she forgot to take her enzymes the day before, she might have a stomach ache. Adherence to her medication is a huge issue and the school allows her to carry the meds she needs so she can be in control. Rosie has a 504 plan to help her have extra time when needed, to be able to go to the bathroom whenever needed, to have water and snacks at any time, and to carry her meds with her.

When she was younger, she had to go to the nurse to get her own snack when other children brought in special snacks. As a preschooler, a bit of extra care was needed from her teacher learning some self care skills and they were ‘very fortunate to have a supportive preschool,’ says Paula.

As a high school student, Rosie enjoys her friends and get-togethers. Large sleep-overs can be a ‘recipe for disaster’ as far as breaking up the routines that work to keep her healthy and also can be high risk for infection. Rosie is very busy managing the demands on time that CF creates. She has to work in two nebulizer treatments, fit in meds and vest therapy, prioritize sleep, manage her stress, and get plenty of exercise. It takes a level of maturity to make sure all this is done well. Rosie goes to a CF clinic at least every 3 months (more if she isn’t feeling well). The fact that the clinic is less than an hour from her home is a huge advantage, as it does not interfere too much with her school schedule.

As Rosie ages, with more transitions and perhaps college in her future, they will take on the challenges as a team and make sure Rosie has all the supports she needs to be successful!

If you have a story you would like us to consider adding to our website, please contact us.