Our Vivian Lee
Vivian and her twin brother, Graeme, were born on January 1st, 2015.
By Saturday of that same week, we started to notice that Vivian was not eating. She was very lethargic and when she did eat she would spit up the whole bottle. I called our pediatrician and she advised us to take her in to Randall Children’s Hospital to be monitored. We headed in that night with the twins, expecting to be there for a few hours or possibly overnight. Little did we know that we would end up being there for 12 days.
After a couple days of not eating and not gaining weight, the Drs. were getting worried that something besides low birth weight was causing Vivi to decline. We knew that both Kirk and I are carriers of the gene for cystic fibrosis, and had given this information to the Drs. Because of this, we knew that Vivian had a 1/4 chance of having CF. They did a couple of tests to try to figure out if it was indeed CF. We put her on enzymes before her feeds, and within 24 hours she had started to gain weight. That was a major sign that this was indeed CF, since she responded so well to the enzymes immediately. We then confirmed her diagnosis with a blood test.
"There are approximately 30,000 Americans living with cystic fibrosis. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients." (CFF.org)
The average life span of someone with CF is 47 years old. Vivi, a normal CFer, has many daily medicines, therapies and practices that affect her life. She will have to take enzymes every time she eats, do her chest treatments 2x/day for the rest of her life. Not only is this disease inconvenient, but it is expensive and very scary.
By coming to Vivi's Vintage Walk you are helping us find a cure for CF! We are praying every day for a cure to be found soon. You can help make a difference by shopping at the market, volunteering at the market, or donating on this site. Thank you for your support!
Photography below by Brittany Rossman Photography