Jackson's Story

What condition was your child born with?

Cystic Fibrosis. Jackson was born a seemingly healthy baby, but when his genetic blood test came back flagged he was sent to do a sweat test at 17 days old, confirming he has CF.

 Q: What were/are some of the biggest challenges that came with the diagnosis?

Being a new mom and getting Jackson’s diagnosis at just 17 days old, I felt like my world was turned upside down. Trying to enjoy my newborn but also grieving and trying to learn all needed to care for Jackson was really hard in many ways.

 Q: How has the diagnosis impacted your day-to-day life?

 CF affects our day-to-day life in so many ways. Jackson began taking pancreatic enzymes every time he eats. Due to CF, mucus lines his pancreas making him pancreatic insufficient meaning his pancreas doesn’t absorb fats. Jackson also started doing Chest physiotherapy (CPT) at 17 days old, CPT helps break up the mucus in Jackson’s lungs with the daily treatments and we have to be very cautious about germs and bacteria.

What do you wish other people would know about your child’s medical?

Just because he looks like a normal toddler, doesn’t mean CF isn’t affecting him. With CF being a progressive disease Jackson will likely develop more health issues as he ages resulting in more medicine and treatments.

 Q: In what ways has your child inspired you?

I see so much resilience in him, through many dr visits, treatments, and even hospital stays, he’s the happiest boy. He’s also given me a whole new understanding for everyone I encounter, someone’s outer appearance or even their attitude in moments doesn’t justify them. You truly never know what someone is struggling with, so give grace and be kind.