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100th day on Trikafta – Celebration and Sadness

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The other day I celebrated my 100th day on Trikafta. There were all these things I wanted to say about setting goals I never thought I could reach, and how I’m virtually running a 5k everyday. But I can’t now. I’m too sad. My 96-year-old grandmother Nana Rose passed away. 

Nana was a huge influence in my life because like me, she lived her life against the odds. She was one of about a hundred people out of more than 20,000 who survived the Holocaust in her hometown of Ludmir, Poland. 

Rose bravely saved family members during the Holocaust, sometimes witnessing the murders of her own relatives. She lived several months underground, sharing a pipe with several family members to get air from above. Eventually, she escaped with her brave future husband Carl, whom she married in January 1945. Their first daughter, Eva, was born in a German displaced-persons camp in 1946. Eva is my mother. 


In 1949, Rose, Carl and Eva moved to the United States, thanks to a sponsorship from the Hebrew Immigrant Aid Society (HIAS). Coming to Jacksonville, FL, without money, family or friends they not only survived, but also thrived, despite dire circumstances. 

Rose and Carl managed to buy a modest but beautiful home as Rose gave birth next to daughter Anita and then Susie. Carl and Rose took on many jobs to make ends meet and Rose even voluntarily ran Jacksonville Hadassah’s thrift shop. Rose’s small family of five in Jacksonville eventually grew to eight grandchildren (one passing away shortly after birth), seven great-grandchildren (soon to be eight) and a number of wonderful friends and family who will miss her sorely.

Rose passed away in the company of her family including her three beautiful
daughters who will continue to share her values and grow her legacy. 

I felt a special bond with my Nana Rose. She had a warrior quality that comes from beating overwhelming odds. She always believed in me and told me that. I plan to continue making a difference in her memory.

We talk about 65 roses in the CF world, but to be honest, I only needed one—and she was awesome.

Live your dreams and love your life.

Andy