Skinners' Defenders

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.  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 and multiple other medications at meals and doing 1 hour of treatments twice a day just like his sister.  

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.