I Better Start Saving for 100 Days in Hawaii

When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled. 

| 3 min read
Susie-Rider-Headshot
Susie Rider
Susie-Rider-Andrea-Beach-Featured-Rectangle

My daughter Andrea was only 8 years old when she learned that cystic fibrosis is a fatal disease. Soon afterwards, she approached me with several questions. Surprisingly, her questions weren't really related to dying from CF, but were more philosophical life questions, such as ...

  • Everyone has to die someday, right? Yes.
  • Don't flowers and trees and animals die, too? Yes.
  • People die of all different kinds of things, right? Yes.

I thought it was great that she was concentrating on how others will go through death too, because that's how life is -- whether you have CF or not. You're born, you live and you die. Luckily, she's always been a fairly optimistic girl, even when it comes to matters of life and death. 

Susie-Rider-Andrea-Beach-Featured-Rectangle
Andrea, in 2001, loving life despite CF.

Andrea, in 2001, loving life despite CF.

But the one question that she asked me -- that I now think about almost daily -- that I also answered yes to, was ...

  • When they find a cure for CF can we go to Hawaii for 100 days and live in a mansion? YES!

Of course I answered yes . How could I not? But deep inside I was saddened with the thought of a cure being so far away that I wouldn't be around to see it or worse, she wouldn't be around. In all honesty, I thought maybe a cure wasn't doable at all. 

Fast-forward 12 years and my doubts of a CF cure have dwindled. Since then, the Cystic Fibrosis Foundation has advanced its drug development pipeline and we now have medications working at the cellular level, attempting to eradicate this disease. Hello, Kalydeco and Orkambi!

We have more knowledge about the importance of exercise, staying active and maintaining compliance with CF health protocols. We have researchers dedicated to making CF stand for "cure found," and I believe that day will come in my lifetime!

I believe it so much that today I find myself wondering, "How in the world am I going to afford living in a mansion for 100 days in Hawaii!?!" What a dilemma to have, right? A dilemma that I have no issues with whatsoever!

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Topics
Research | Drug Pipeline | Parents & Guardians
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Susie is a graphic designer based in Iowa who runs her own business, Tuyo Print Plus. She is a first-generation Peruvian born in the United States, and cites Spanish as her first language. In 1996, she married her college sweetheart Jeff, and together they have two children, Andrea and David. After her daughter Andrea was diagnosed with CF at age 4, Susie immediately immersed herself in fundraising for the Cystic Fibrosis Foundation, and her Great Strides team, Andrea's Angels, was formed. In 2015, the team celebrated a record-breaking year, raising more than $30,000. Susie serves on the Board of the Iowa Chapter and the CF Parent Advisory Council at Blank Children's Hospital. Follow Angels4Andrea on Facebook.

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