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.
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. We decided to have one more baby. 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 30 minutes of treatments a day. By the time he is a year old his treatments will be increaed to 1 hour treatments twice a day just like his sister. 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.
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
Please join Skinners' Defenders. We need your help to add more tomorrows!
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. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.