28 Jan Making Great Strides
In the fall of 2011, my oldest daughter María, at the time 11 years old, was diagnosed with a rare form of cystic fibrosis. After dealing with a mystery illness for several years, taking asthma and allergy medications, this diagnosis was a shock to our family.
Cystic Fibrosis is a genetic disease that affects the pulmonary and digestive systems. Currently, the average life expectancy is around 37 years of age. Her doctor said she had a rare mutation of the disease. In Maria’s case, her digestive system was not compromised, only her lungs were affected, we were told that she would have a normal life expectancy with all her daily treatments and medications.
My wife, our other 3 kids and I got DNA testing to see who else had CF. For 2 weeks, I prayed really hard that I had the disease (just to prove that this rare mutation of CF was nothing to be concerned about, I was 37 at the time). We all tested negative, except Clarisa, our second oldest daughter, at the time 9 years old. She had no symptoms and her pulmonary function was above average.
No one would ever ask for something like this to happen, but the outcome of something like this happening is truly a blessing. These kids are fantastic, they’re thriving, they’re sensible, they’re generous, they’re great students and we are very proud of them. More than ever, we treasure spending time together.
Unfortunately, most kids with cystic fibrosis have more aggressive forms of the disease, causing more damage to their lungs and digestive systems. The Cystic Fibrosis Foundation has done an amazing job in funding and supporting breakthrough research to develop new treatments and drugs to help all these kids. In the CF community, we truly believe a cure will be discovered in our lifetime.
Hůga is about celebrating and sharing life. Hůga is good company and unhurried time. Today, we join the Cystic Fibrosis Foundation in their quest to add tomorrows for people with cystic fibrosis.
If you would like to read more about the CF Foundation, visit their website at cff.org
Hůga co-founder and CEO
P.S.: please take a moment to watch this phenomenal music video by One Republic dedicated to one their fans who lives with cystic fibrosis and is a true inspiration.