With both Jeff and I being a carrier of CF, we have a 1 in 4 chance of having a CF child with each pregnancy. In 2015, we welcomed our first child, Kylie. At about a week old, we received news that Kylie's newborn screening showed that she had Cystic Fibrosis. A week later, we went to do the conformation sweat test. That evening, Kylie's pediatrician called to confirm our fears. As new parents, it was hard to hear that our sweet little girl had this horrible disease. It took some time to get into our new "normal". Kylie's "normal" consists of taking enzymes with every meal to help her digest food, 2 hours of treatments a day when she's health, and 4 hours of treatments a day when she's fighting a cold/sickness. Treatments consist of 3 different inhaled medicines and wearing an airway clearance vest for 30 minutes at each treatment time. We also spend a lot of time managing doctor appointments and clinic visits. Clinic visits often take 2-4 hours depending on how many different departments we see. It is important to keep up with these different specialists to keep Kylie healthy. When extra treatment sessions are not enough for her to fight off a cold she has to take antibiotics. If antibiotics aren't enough, then she must be admitted into the hospital for 2 weeks minimum of IV antibiotic therapy. With each infection, there is a significant risk of damage to her lungs.
In 2017, we welcomed a little boy, Grant. We discovered he had Cystic Fibrosis at 2 days old. Grant was born with a meconium ileus. A meconium ileus is a blockage of meconium in the small intestine. Grant had to be transfered to our local NICU at 2 days old. The plan for him was to try to remove the blockage without surgery by giving him multiple enemas. After 7 days and multiple enemas, Grant developed a fever and doctors believed he needed surgery to correct the meconium ileus. We decided it was time to transfer him to Vanderbilt's NICU where they had more experience with Cystic Fibrosis. Grant spent another week at Vanderbilt where they got his fever under control and corrected the blockage without surgery. After 16 days in the NICU and 3 different hospitals, Grant was finally able to come home. Grant was "officially" diagnossed with a sweat test at about a month old. Grant's "normal" involves taking enzymes at every meal and doing breathing treatments and wearing his vest for 30 minutes twice a day. Grant currently is seen by Vanderbilt's CF clinic every 2 months to monitor his weight, enzyme dose, and make sure he is handling his treatmens. It is equally as important for Grant to stay healthy as it is for Kylie. Grant is at risk for the same lung damage with each infection. We work hard to keep germs and sickness out of our house to keep our kids healthy.
As parents, our goal is to keep our children healthy enough to live to see a cure for Cystic Fibrosis. Please join our team and help us add more tomorrows for Kylie, Grant, and others with Cystic Fibrosis.
-- Jeff & Sarah Skinner
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.