As part of CF Awareness Month in May, Jessie Stein Diamond, a freelance writer and member of the Emily’s Entourage Board of Directors, writes about getting to know Emily and lessons she has learned about the value of time and living with no regrets.
Petite, precise and wise beyond her 28 years – Emily of Emily’s Entourage has forever altered my appreciation for the value of time. I’ve been lucky enough to get to know her as an Emily’s Entourage board member and want to share a few insights from our recent online correspondence:
“I find immense peace and comfort knowing that I’m doing everything I can, that I’m giving life and Cystic Fibrosis my best shot. That’s all anyone of us can do – take the deck we’re given and give it our best shot. While I haven’t lucked out with CF, I have more than my fair share of luck in many other facets of life. That recognition and appreciation isn’t lost on me for a millisecond. Ever.”
The median life expectancy of people with CF is in the mid-30s. Despite this, or perhaps in part because of it, Emily, 28, lives fully. She loves and is deeply loved by her friends and family, and honors her hunger for new knowledge and experiences by working in healthcare marketing, while recently completing a master’s degree in bioethics. Somehow she manages to fit all this and more around the three to four hours she devotes daily to airway clearance and breathing treatments for management of CF — and that’s when she’s healthy.
She has inspired the Emily’s Entourage board (and our own friends and families) to step up to help raise money to accelerate research and therapeutics for CF.
Emily is precious to us.
Time is precious to her.
We are keenly aware that other people with CF like her are equally loved. And so we we are eager to do everything we can to expedite a cure.
Living a life without regret takes courage and perseverance for all of us. But Emily takes it to a whole other level.
The world needs Emily’s talents and wisdom. Emily needs therapeutics to help stave off end-stage treatments like lung transplant.
– Jessie Stein Diamond