As many of you know, in October 2009, my niece Caroline was born with cystic fibrosis. Cystic fibrosis is a life-threatening genetic disease that primarily impacts the lungs and pancreas - leading to severe lung infections and reduced ability to absorb fats (and more importantly fat soluble vitamins) that, taken together, substantially reduce life expectancy.
Caroline has the Delta F508 gene mutation. This mutation is considered the most severe CF mutation because it affects BOTH the respiratory and digestive systems. We are so grateful that at 18 months, Caroline has remained incredibly healthy, and is a thriving little girl.
Last year, to raise money for the Cystic Fibrosis Foundation, my brother and his friend Matt hiked 30+ miles through the mountains of North Carolina. In support of his fundraising efforts, I made and sold 65 fabric roses - raising $1000. Last year, my brother and Matt raised over $30,000 for the the CFF.
When my brother told me the significance of the phrase "65 roses," I knew that this would be the theme of my fundraising efforts. "Sixty-five roses" is what some children with CF call their disease, because those words are easier for them to pronounce. You can read the story about how this phrase was adopted by the Cystic Fibrosis Foundation here.
I was so happy to learn that $.90 of every dollar donated to the CFF goes to RESEARCH to FIND a CURE for CF.
This year, in support of my brother's fundraising efforts, I am making several types of roses - sewn fabric roses (two styles in various colors), earrings, hair clips, and sewn t-shirts. Those pictured in this post are a few examples of what I will be offering for sale.
Over the next couple of weeks, I will be sharing more about Caroline's daily life as a kid with cystic fibrosis, as well as a bit about the good that the Cystic Fibrosis Foundation is doing - including how they recently advocated for my brother's family when Caroline lost coverage for her care at UNC.
I hope you will check back for updates. Thanks in advance for your support of my family, and of the Cystic Fibrosis Foundation.