Our Story

Two weeks after Violet was born, we received the call that would change our lives. Her newborn screening confirmed she had Cystic Fibrosis.

Violet is a bright, energetic kid who loves gymnastics, dancing, and making people laugh - and we want her future to be filled with dreams, not treatments.

Early in my pregnancy, I learned that I was a carrier of the gene for Cystic Fibrosis. A few weeks later, we found out that Jason was a carrier as well. This came as a complete surprise to both of us, as we didn't know much about CF at the time. When both parents are carriers, there is a 25% chance that their child will be born with Cystic Fibrosis.

We tried to remain hopeful throughout the rest of the pregnancy. On May 3rd, 2020, we welcomed our beautiful daughter Violet into the world. Two weeks later, her newborn screening confirmed that she had CF.

We were quickly connected with the incredible CF team at Advocate Children's Hospital, who have provided guidance, care, and support ever since.

Since her diagnosis, Violet's routine has included many treatments and medications to help keep her healthy and protect her lungs:

-Taking pancreatic enzymes before every meal since infancy

-Daily vitamins and a high-calorie, high-salt diet

-Manual chest percussion therapy as a baby

-Starting a therapy vest for airway clearance at 26 months

-Routine clinic visits with a pulmonologist, dietitian, respiratory therapist, social worker, child psychologist, and pharmacist

-Starting Orkambi after age 2

-Daily inhaled Albuterol and nebulized Pulmozyme before airway clearance treatments

-Starting Trikafta shortly after her 3rd birthday

-Regular bloodwork to monitor liver function and vitamin levels

-Annual eye exams and chest X-rays

-Extra airway clearance treatments whenever she's sick to protect her lungs

-Pulmonary function testing starting July 2025 to monitor her lung health

While we are incredibly grateful for the treatments available today, many that people with CF in previous generations never had access to, these treatments are not a cure.

Why We Walk

Just a few decades ago, many children with Cystic Fibrosis did not live long enough to reach adulthood.

Thanks to research funded by the Cystic Fibrosis Foundation, life-changing medications like Trikafta now exist and are helping people with CF live longer and healthier lives.

But there is still no cure.

That's why our family participates in Great Strides each year, to support the research that continues to transform the lives of people with CF and bring us closer to the day when CF stands for "Cure Found."

We are not just fighting for Violet.

We are fighting for everyone living with Cystic Fibrosis.

How You Can Help

If you're able, please consider supporting our team in Great Strides.

Every donation - big or small - helps fund research, new treatments, and specialized care for people living with Cystic Fibrosis.

Your support means the world to our family and to the entire CF community.

Thank you for being a part of Team Violet!