My name is Joanie Santander, and I have Cystic Fibrosis.
I was diagnosed thanks to the birth of my younger brother. He was failing to thrive, hospitalized, and constantly sick. Back when we were born newborn screening were not done. It is now required by law.
When my brother received his diagnosis of CF the doctors told my parents that they would have to test their other children. Immediately my parents knew that their three-year-old baby girl with constant stomachaches and night sweats, who would wake up shaking from low blood sugars, had the disease too.
Since my diagnosis I have been hospitalized over 21 times for CF exacerbations, I have had 21 PICC lines, now have a PORT, and have done over 5000 respiratory treatments to treat my disease.
I would be remiss if I didn’t tell you about my brother too. He has been hospitalized more times than I could ever know, and had a much harder battle. Today, Louis is 25, and every day we pray he gets to be on the transplant list for the new lungs he needs. He is hilarious, suave, and has the cheekiest grin you ever saw.
I am married. I have ran two half-marathons, countless 5ks, and in college was an active cyclist in the Multisport club. I hold a bachelor’s degree and today I work full time, still doing treatments, taking pancreatic enzymes, and my husband and I are hoping to have children.
Your generosity to the CFF has made all these things possible.
Your generosity has given me drive, and confidence I wouldn’t otherwise have.
I wouldn’t be here without the treatments your generosity has funded. From the bottom of my heart, and from my family: Thank you.