Join us this Cystic Fibrosis Awareness month: Natalia’s story

Natalia was diagnosed with Cystic Fibrosis at birth. Cystic Fibrosis (CF) is a genetic disease that causes persistent lung infections and limits the ability to breathe over time. CF causes the body to produce thick and sticky mucus that can clog the lungs and obstruct the pancreas. It can also affect the digestive system. Since Natalia’s diagnosis, every day she endures over three hours of breathing treatments in order to maintain healthy lung function.

Natalia was set to start school in the fall of 2018. Even though germs can be very harmful to her, she had been healthy her whole life and she started at the same school her mother had been teaching at. Within two months of starting Kindergarten, Natalia became so sick that her lung function dropped by almost 50%. They immediately admitted her to the hospital and ran many tests to find the problem. Within three weeks of being at the hospital (three hours away from home and her other family and friends), she was given difficult news. Test results had shown she was battling three major infections in her lungs and her medical team did not know what the outcome would be.

While in the hospital, her family celebrated her sixth birthday and missed their long-awaited (and saved for) Disney Cruise. Once discharged from the hospital, her family spent the next year administering around the clock IV medicines. She completed four procedures, more than 40 blood draws and over 1440 hours spent doing breathing treatments. Natalia was not allowed to return back to school and her mother became her full-time caregiver.

2018-2019 has been a challenging year for Natalia’s family, to say the least. However, two days before her much-awaited seventh birthday party, she was given a clean bill of health from her medical team! It was a very special birthday, as the last two birthdays have been spent at the hospital. Her family celebrated with an amazing unicorn cake baked by Sugar Angel Michelle Leckenbusch. Not only was the unicorn 3D, but it was also drinking Starbucks!

May is National Cystic Fibrosis Awareness Month. Thousands of volunteers will come together across the country to raise awareness about this disease and tell stories of hope and progress. More than 30,000 Americans are living with cystic fibrosis. There are numerous fundraisers and volunteer opportunities around the country. There are also places to donate to CF research with the goal of finding a cure. To learn more about how to get involved, visit the Cystic Fibrosis Foundation.

With love + cake,

Olivia Graupmann

Icing Smiles Blog Writer