I am the proud grandparent of Lucia and Palmer Santichen (pictured above), 4 year old identical twins with one of the rarest forms of Cystic Fibrosis. Upon birth, they were life-flighted to Children's Hospital of Pittsburgh (CHP), a two hour drive from home, where they spent their first 104 days in the NICU. They endured several surgeries and had a few close calls. The girls are underweight but currently doing well. They each take 7 pills before every meal and 4 before a snack. This medication isn't a cure or even therapeutic. It simply allows them to absorb nutrients needed to survive. They also spend 30 minutes 3 times a day with a rigorous airway clearance physical therapy. This past May, Lucia spent 14 days in CHP due to a virus. In October she spent another 14 days due to a lung bleed that needed embolization. January 1, 2025, Lucia was taken by ambulance to CHP where she had the upper portion of her lung removed. She ran into complications and ended up spending 9 days inn the PICU and 7 days in a regular room. It was a month long recovery and she is thriving now.

This year we have another CF baby joining our team...Ehva Arendas. Please join me in welcoming Ehva and her Mom, Lynley, to our team!!  Go to Ehva's page and read her story!  https://fundraise.cff.org/Pittsburgh2025/EhvasArmy

In America, approximately 40,000 children and adults have CF. Three thousand of them have rare variants that do not respond to the therapeutic medications that are currently available. Of this 3,000, only 10 others have the same variant as Lucia and Palmer. Money for research, medication, clinical trials and a cure is needed for the 3,000 individuals with rare variants, as well as for all people with cystic fibrosis.