So most people know that Cystic Fibrosis runs in my family. I have two sisters, two first cousins and my first cousin has 3 children, ALL with CF. I have tried to do a little of my part to get involved with fundraising and raising awareness for a cure. My sisters have greatly benefited from research and the latest discoveries in treatments. Its amazing to think back on what they did when we were younger compared to the care they get today!
The CF foundation here held recognition dinner for top fundraisers at La Caille Restaurant, one of the fanciest places in Utah. I figured it would be fun to dress up and take Suz to some place nice while benefitting CF at the same time. It was VERY fancy and very nice to be there. I was in awe of people who have no connection to CF yet they donate their time and resources to fund raising and volunteering. There were moments of the night that were tender as we saw photos of young children and watched a slide show of local Utah CF patients. Some of their situations reminded me so much of my sisters and it was hard to watch at times. Hard because I have just a glimpse of what they're going through because of my sisters. I don't really know....but I have a glimpse.
Overall it was a lovely evening of fine dining and recognition. I saw lots of hope in the eyes of young mothers with newborn babies with CF when I told them I have a 29 year old sister who is a wife and a mother and a 26 year old sister who is happily married and has experienced some amazing things in her life because of new research and new methods.
La Caille created a new garden called the "65 Roses" garden dedicated to CF. We saw it in the dark and it looks beautiful. Here's the story of why 65 roses is a trademark of Cystic Fibrosis.
"65 Roses" is what little children suffering from Cystic Fibrosis call their disease. As the following story illustrates, the words are much easier for children to pronounce....
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had Cystic Fibrosis. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's four year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his mom, "I know what you are working for."
Mary was dumbstruck because Richard did not know what she was doing, nor did he know he had Cystic Fibrosis. With some trepidation, Mary posed the question back to Richard, "What am I working for, Richard?"
"You are working for '65 Roses'," he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his tiny body to hers. He could not see the tears running down Mary's cheeks as she stammered, "Yes, Richard, I'm working for '65 Roses'."
I feel like helping out with CF fundraising is the least I can do to help. I've watched my two younger sisters grow and struggle and overcome all that this disease throws at them. If my small contribution can make life better for someone else's little sister or brother....then its all worth it. Click here if you'd like to donate to CF or find out more.
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