Since May is Cystic Fibrosis (CF) Awareness month, I thought I'd share a little bit about Jack's condition for those who may not be familiar with CF. Jack was diagnosed with CF when he was 8 weeks old, via his standard newborn screening. I'll never forget that phone call, and the flood of emotions and uncertainty we felt. Together with our family and care team, we learned as much as we could, started treatments right away, and adjusted to our new daily routine. Jack is doing awesome and is healthy, and we are so fortunate he has not had any major complications so far. We are definitely lucky.

CF is a progressive, genetic disease that primarily affects the lungs and digestive system. It causes thick, sticky mucus to build up in the body, leading to frequent lung infections, digestive issues, and other complications. He wears a device called “the vest” morning and night with his inhalers, that loosens mucous in the organs and prevents buildup. Many CF patients (including Jack) also have “exocrine pancreatic insufficiency” (aka EPI) which means the pancreas does not produce enough digestive enzymes needed to process the major nutrients in foods (protein, fats, and carbohydrates). If untreated, this causes malnutrition and "failure to thrive". Jack takes enzyme supplements with every meal so that his body can absorb the nutrients needed to grow and thrive - and he's growing like a weed!

Historically, the average life expectancy for someone living with CF is 30. Even in the 1980s, many children with CF did not live to their teens. Amazingly, medicine has advanced leaps and bounds since then and the life expectancy is currently over 60 years old! We are extremely grateful for the advances in modern medicine, and all of the treatments which keep Jack healthy and have become a part of our daily routine. His CF care team has been beyond amazing from day 1. There is currently no cure, but thanks to ongoing research there have been major advances in medication which may lead to a cure in Jack’s lifetime. There are even some medications, called modulators, currently available for the more common “variants” of CF which drastically improve overall symptoms. However, Jack falls in the 10% of CF patients with a rare genetic variant of CF, for which there is no modulator available yet. Much more research and work is needed in order to make modulators available to the 10% of CF patients, and continuing to improve treatment for all CF patients so every person living with CF can live a long, healthy life.

This month, we’re walking in the Great Strides fundraiser to raise money for critical research and support for those affected by CF. If you’d like to make a donation to the Cystic Fibrosis Foundation to help support this cause, it would be greatly appreciated and you can do so by clicking the link below. There is no amount too small, every little bit helps. Thanks for taking the time to read and learn a little bit about CF!