Emily joined the patient advisory committee for the CF Clinic this past August. She immediately jumped in and headed up the website project. She claimed she really had no experience designing websites but she had the time and she wanted to do it. Not only did she contribute greatly to our monthly phone meetings, the website she designed was excellent. I just received an email that Emily passed away this week. I only knew her by her voice, which I loved the sound of, a little husky and deep with a sense of a big smile. She had been on calls since August and 2 months ago she wasn't participating anymore. I knew she was in Hawaii for a bit and one of the other members mentioned she wasn't able to do things right now. I heard she was in and out of the hospital before she went to Hawaii, but that's all I really knew until this e-mail.
Thank you Emily for all your hard work, your website will forever be available for all the CF patients. You were a strong member of our PAC, always contributing action items not just opinions. It's bittersweet that we worked on projects together once a month, but never really got to know each other. We shared a commitment to educating CF patients, providing tools that helped manage CF better and were committed to living as best we could with this awful disease. I know that you lived your life out until the end. That you were committed to living a full and beautiful life. May God bless your family at this time. The burden on their hearts of saying goodbye to their daughter at a young age is a lot to bear. But He will work through this and know that you have blessed me.
