65 Roses Day 2023

The first blog I kept was called "If I Should Fall Behind," and it was meant to track my training for my first marathon, which I ran 20 years ago. Jacob was two at the time and we were living with the shadow of cystic fibrosis over everything we did. You don't have time to be terrorized by the fact that your child's life is in danger because you are doing the day to day things to keep them healthy. Only in the quiet moments - late at night or in your car - does the world crash inward.

So much has changed since 2003. Jacob is now on life changing medicine that has given him a "normal" existence. He hasn't be hospitalized since he began the medicine called Tikafta. Before he started taking it, things were getting rocky with his health. We are blessed that the medicine is available for him and that it's working. There are many CF patients for whom the medicine doesn't work, and for them we continue the fight to find a cure.

Today is 65 Roses Day. According the CFF.org: "The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as '65 Roses.' Today, '65 Roses' is a term often used by young children with cystic fibrosis to pronounce the name of their disease."

I hope you'll all take a moment to reflect on the many people lost to this terrible disease, and send out a prayer or good vibe to those surviving with it. And iy you feel so inclined, you can make a donation.

https://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?team_id=120043&pg=team&fr_id=9574

Aloha

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